And when your father determines the course of persons’ lives (this was before mandatory sentencing guidelines) and your mom cross-examines witnesses for a living, well, you must advocate for yourself with facts and reason if you ever want to leave the house to go anywhere but the library.
Today, I often draw on the lessons my parents taught me because — as is true for many disabled persons or cancer patients or, in my case, both — I regularly advocate for myself in the physician’s office, drawing on facts and science to correct them when they make a material error, to best protect my health
I’ve been disabled with myalgic encephalomyelitis (ME and sometimes called chronic fatigue syndrome) for 29 years and have had thyroid cancer for the better part of the past three years (it spread to my lymph nodes even after my thyroidectomy and radiation), so I’ve been treated by many doctors. Some make mistakes — particularly if you’re like me and your symptoms tend toward the atypical or if you’re battling two illnesses at once.
So, when you’re physically ill, emotionally vulnerable and draped in a gown that seems designed to stay open, how do you debate individuals whose schooling and training have taught them that they know more than the patient, even when the patient can handily demonstrate that the physician has made a material error?
How do you proceed in what feels like a David and Goliath scenario when, really, all you want to do is stay alive, get as healthy as possible and not engage in a knockdown, drag-out discussion with a person whose diplomas dot the walls like bubbles in champagne?
As I learned from my parents: Stick to the facts, don’t make it personal and show respect but never get intimidated. All of which can sound hard when, say, you’ve just had several tubes of blood or perhaps a vital organ removed.
It helps to remember that the best physicians truly appreciate both that you’re paying attention and participating in your health. It sounds paradoxical, but the smarter the physician, the more comfortable she or he is learning new information from the patient.
For instance, last year I had to explain to one of my endocrinologists that ME significantly impairs the immune system and that there’s a burgeoning field of research regarding ME and cancer.
I read her the relevant chunk of a study conducted by the National Center for Biotechnology Information. At first, she didn’t seem particularly thrilled that I’d read the study and she didn’t know it existed, but when she saw how it furthered my treatment, she became enthusiastic. I saw her again recently and we continue to work well together. I trust her and that’s invaluable.
On the flip side, one of my first cancer specialists wanted me to taper off my pain medications before surgery because, as she kept repeating, “I don’t want you to end up like Michael Jackson.” When I asked for clarification because “Michael Jackson” is a fairly loaded reference in this era, she repeated it yet again and when I remained baffled, she blurted out, “I don’t want you to have to go to heaven!”
I confess it was hard not to make this exchange personal because she’d already determined my fate in a potential afterlife and, also, brought her religious beliefs into my consultation, which is a clear-cut breach of ethics.
When I explained that she wasn’t providing medical or legal specificity in a situation that called for both, she said, “You’re a terrible patient who says terrible things.” I tossed my purse onto my walker and rolled on out of there.
I later reported her to the clinic’s chief medical officer. It’s fair to go over a physician’s head if safety is an issue.
I realize not everyone learns at the family dinner table how to best advocate for themselves. While I don’t seek confrontation, I’m fine if it arises and that’s a great gift from my parents.
But if the thought of debating a physician still leaves you uneasy, please don’t beat yourself up. They’re members of a revered profession who get to prod you with hammers and needles and wooden sticks and, as such, a power imbalance arises. Some seem to revel in it, but most want to help you get better.
Even the physician who invoked my death didn’t want me to actually die. That’s worth remembering the next time one gets it wrong.