I’m my parents’ son, but it’s a different world today than the one they lived in. My parents came from a place where the doctor knew what he (back then it was a man, more often than not) was talking about and they did what he said, no question. He had the white coat hung on his shoulders, the diplomas hung on the wall, and the stethoscope hung around his neck. He knew best. They were like poor Brian Regan at the doctor.
Although I’m the child of my parents, I’m also a child of the 60’s. We learned to question authority, including doctors. The arrogance and god complex of many medical practitioners has hung in there long after they stopped prescribing bloodletting and Radithor. Here are a few real life examples of the arrogant behavior that gives me pause:
Doctor: “Don’t eat anything on this list.”
Patient (pointing to a confusing entry): “Why is this on the list?”
Doctor: “Just don’t eat any of them.”
Patient (on being diagnosed with MS based solely on a single MRI): “I thought an MS diagnosis required multiple symptoms?”
Doctor: “I know what I’m doing. I’ve been doing this for 30 years. You fit the profile.”
Doctor: “No more trips to Haiti.”
Doctor (to patient in wheelchair): “Why don’t you have a power chair? I guess you just like to be pushed.”
Dermatologist: “Put on SPF15 sunscreen every day. And if you go outside, put on SPF 30.” (Sunscreen indoors? What world are you living in, Doc?)
Neurologist: “MS doesn’t cause pain.”
Neurologist: “MS isn’t the cause of your clumsiness.”
Doctor: “You can’t disagree with me.”
Patient: “Why not?”
Doctor: “Because I’m the doctor.”
It doesn’t take many encounters like those before the naiveté of my parents melts away altogether, replaced by the cynicism I now subscribe to.
Never has there been a better reason to question doctors as there is when dealing with MS. They’re just flailing away at this beast the same as the rest of us. As my doctor once said, “MS keeps you humble.” (That’s why she’s my doctor.)
I remember standing up to my (former) neurologist. I’d been on one of the interferon drugs but had developed the nasty NABs (neutralizing antibodies). Who knows how long I’d been plunging a needle into myself for no reason? This being before the advent of oral meds, my options going forward were limited:
Tysabri – Hmmm… It kills about 1 in 1000 people who take it, 1 in 100 with certain risk factors. Yeah, I think I’ll pass on that one. I don’t like the odds.
Copaxone – A shot every day? Not sure I want to lower my quality of life that much, thank you very much.
That’s when I dropped out of the DMT scene. By the time newer, less perilous options became available, I was doing so much better under my PB&J regimen, I decided to stick with that.
The lesson here isn’t (necessarily) to give up the drugs, it’s to stick up for (not just stick a needle in) yourself. Don’t be bullied by doctors, the medical establishment, or advertising. It’s your right (dare I say responsibility?) to ask questions. You know your body and your condition better than any doctor. You are your own best advocate.
If you don’t do it, who will?
It’s safe to say that this blog will never get an endorsement from pharmaceutical companies or MS organizations with such counter-cultural views, but I have to practice what I preach: Advocate for myself. If someone else is helped, so much the better.