And when your father determines the course of people’s lives (this was before mandatory sentencing instructions) and your mother asks witnesses for a living, well, you have to stand up for yourself with facts and reasons, if you ever want to leave the house, for to go anywhere except the library.
Today, I often take the lessons my parents taught me because – as is true for many people with disabilities or cancer patients or, in my case, both – I regularly advocate for myself in the doctor̵
I have been disabled with myalgic encephalomyelitis (ME and sometimes called chronic fatigue syndrome) for 29 years and have had thyroid cancer for most of the last three years (it has spread to the lymph nodes even after my thyroidectomy and radiation), so I have been treated by many doctors. Some make mistakes – especially if you are like me and your symptoms are prone to atypical or if you are struggling with two diseases at once.
So when you are physically ill, emotionally vulnerable and wearing a dress that seems designed to stay open, how to discuss people whose training and education have taught them to know more than the patient, even when the patient can easily demonstrate that the doctor is made a significant mistake?
How to proceed in what feels like a David and Goliath script, when in fact all you want to do is stay alive, get as healthy as possible and not participate in a knockdown, a discussion with a person whose diplomas are scattered on 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 be afraid. All of this can sound difficult when, say, you have just removed a few blood tubes or perhaps a vital organ.
It helps to remember that the best doctors really appreciate the fact that you pay attention and participate in your health. It sounds paradoxical, but the smarter the doctor, the more convenient it is for him or her to learn new information from the patient.
For example, last year I had to explain to one of my endocrinologists that ME significantly damages the immune system and that there is a thriving area of research on ME and cancer.
I read her the relevant part of a study conducted by the National Center for Biotechnology Information. At first she didn’t seem particularly excited that I had read the study and she didn’t know it existed, but when she saw how it contributed to my treatment, she was thrilled. I saw her again recently and we continue to work well together. I trust her and that is priceless.
On the other hand, one of my first cancer specialists wanted to lose weight on my pain medication before surgery because, as she kept saying, “I don’t want you to end up like Michael Jackson.” When I asked for clarification, because “Michael Jackson” is quite busy reference in this age, she repeated it once more, and when I was confused, she erupted, “I don’t want you to have to go to heaven!”
I admit that it was difficult not to make this exchange personal, because it had already determined my destiny in a potential afterlife and also brought my religious beliefs into my consultation, which is a clear violation of ethics.
When I explained that she didn’t provide medical or legal details in a situation that required both of them, she said, “You’re a terrible patient who says terrible things.” I tossed my bag on the walker and rolled out.
I later reported it to the clinic’s chief medical officer. It is fair to go through a doctor’s head if safety is an issue.
I realize that not everyone learns at the family dinner table how best to stand up for themselves. Although I’m not looking for a confrontation, I’m fine if it arises and it’s a great gift from my parents.
But if the thought of discussing a doctor still makes you worried, please don’t fight. They are members of a revered profession who can provoke you with hammers and needles and wooden sticks, and as such a power imbalance arises. Some seem to enjoy it, but most want to help you get better.
Even the doctor who referred to my death didn’t really want me to die. It’s worth remembering the next time someone gets confused.