Five years ago, I didn’t know the first thing about speaking to doctors. I walked into the clinic knowing that my health was eroding. I’d already had to quit one job, and I worried about my ability to maintain my current position. But I trusted that the medical community had the answer. My doctor would know what to do, and everything would be fine.
When my physician asked how many migraines I got each month, I guessed. I was in the prodrome stage of a migraine that morning and already foggy, but I guessed. “Seven?”
I didn’t know. I had no records. All I knew was that I had trouble functioning most days. My migraines could last three or four days. I was having trouble keeping my appointments. But she didn’t ask any of that.
“Okay,” she said. “So not that bad then.”
I shrugged. I waited patiently for her to ask how this was affecting my quality of life, my ability to work, my fitness regimen.
She never did.
Instead, she gave me a clean bill of health that day and told me she’d see me back next year.
I was agreeable and polite. I did what the doctor ordered. I answered questions with absolute, even blind, trust.
But it was all wrong. My approach was completely and totally wrong.
* * *
So yes, sure. There’s plenty of blame we can lay at my physician’s feet. She didn’t get me diagnosed sooner. She didn’t refer me early enough to the people who actually could accurately diagnose me. All true.
But she also didn’t have the information she needed to get me those referrals. My doc and I, we’d had a communication breakdown and didn’t even know it. All patients walk in with an experience, which often we can only describe in subjective terms.
My ears ring all the time. Sometimes I’m so weak that I can’t even get a mug out of my cupboard. I can’t see sometimes, and other times the room spins.
These may not seem subjective to us. They are concrete experiences we’ve lived through, and we are trying to describe them in the clearest terms possible. They are facts.
But doctors are professionals. The good ones anyway won’t diagnose on a hunch. They won’t prescribe a treatment just because what you’re describing kind of lines up with symptoms of a particular condition. They are not WebMD. They like to be sure.
Especially before a decent doctor pulls out the label “chronic” and sticks it on a patient, they want to be really goddamn sure.
And if it’s not interfering with your life, from what they can tell, then they are going to wait on it and hope it goes away. Especially if you’re young and relatively healthy.
So here’s what I’ve learned:
1. Doctors don’t know what to do with qualitative information.
My best guess is that med school does something to their brains. All that memorizing and quantifying divorces them, slowly but surely, from their ability to process qualitative information.
Truth is, I don’t really know. It could be as simple as limited time. All I know is that most physicians don’t ask questions that invite their patients (me) to disclose life quality impacts. Doctors don’t ask:
How has this impacted your ability to work?
Have you had to change the way you do things in order to maintain your normal routines? What have you changed?
How is this affecting your ability to manage other areas of your health, like sleep and fitness?
This is a huge problem because this is how we experience health struggles. We start missing work. We are unable to meet commitments at home. Our social lives crumble. We lose friends. And regular pain and fatigue disrupt sleep and exercise and dietary routines. We may not be able to say how many days this happened, but we sure can tell you that we’re afraid we’re going to lose our jobs and that we feel like we can’t ever sleep enough. But doctors don’t ask these questions. And if you share it anyway, they will steer you back to numbers or sympathize and move on.
2. Always come prepared with quantitative data.
Because of this doctor-brain peculiarity, you need to have something else to give them. And that something else is numbers. I guarantee they will hop off their stool and get cracking if you have numbers.
The problem is they don’t communicate this.
No one told me, “Hey, start logging how many days you have vertigo and how many days you have migraines.” No one said that, so I didn’t know. I just went along with my life, which got harder and harder to do. But because I couldn’t say how many days each month it was harder, their doctor-brains couldn’t do anything with that information.
So numbers, people. Numbers all the way home.
Especially if you’re a woman, and especially if you’re a woman of color (there are studies on this, so many studies, please just Google it). But it’s also true if you’re overweight or, honestly, if you have any other feature that leaves the medical community doubting your credibility. Youth. No insurance. LGBTQ+. Old age. I mean, take your pick. So: Numbers.
You’ve got to keep track of those symptoms. It doesn’t matter how. Jot it in a journal. Write it on your calendar. Log it on your phone. For all sorts of conditions, there are apps now. Personally, I use Migraine Buddy. Its bar graphs and charts and tables of numbers have warmed my physicians’ hearts. My neurologist, my sleep doc, my PCP—all of them saw those numbers, and their eyes lit up. There was a bounce in their step. And they said, “Let’s do this!” I got my abortive and preventative prescriptions, which help me work. And I got sleep treatment, which changed my life.
All because of numbers.
Doctors are funny. They can only see the forest if you count the trees.
3. If you haven’t got quantitative data, bring a witness (preferably a white male) to deliver qualitative facts.
Yep. I said it. You need a white-man buddy to be your doctor mediator. Sometimes you don’t have a good data set. The symptoms are just too new. So you have to walk into an appointment with nothing but qualitative data. You need a white man.
Mine is my husband. But neighbors, friends, a brother-in-law will all do nicely as well. The point is credibility. The medical community is infused with all the same biases as the rest of society, but the history of medicine is just awful, abysmal really, when it comes to women and people of color, especially black women. So, if you tick any of those boxes, it’s best to come prepared. Hence, the white man you invite along: preferably an educated, middle-aged, cis white male.
I could have told my neurologist that I collapsed, couldn’t see, couldn’t speak, was too weak to move, and became drenched in cold sweat. But this, to most doctors, is subjective, qualitative experience.
It is not verifiable.
Something seen from the outside is, to them, more objective.
My husband had seen every incident, so I brought him along. And my neurologist, who is a very good neurologist, was extremely eager to hear Josh’s experience of my experience. This is a bizarre worldview that’s rooted deep in Western scientific thinking. But more on that another day.
So yes, walk into a doctor’s office, and you are no longer the authority on your own body. Especially (have I made the point enough yet?) if you are a woman and/or a person of color.
Broken systems are not going to be fixed in a day, and the priority right now is the broken system of your body. So take a short-cut and bring someone doctors are trained to trust, like that toothpaste-commercial guy in a lab coat: a white man.
4. Keep your data current.
And I have learned this the hard way. Four years into chronic illness, and I’m telling you: things change. They shift. One summer, I was able-bodied again. My balance was stellar. My energy? Four-mile jogs. I was firing on all cylinders. But a few months later? Things took a dark turn.
So you just don’t know.
But now that you know doctors only get numbers, keep your numbers up to date, dude. Don’t ever stop reeling them in. Next time things get worse and you’re worried, don’t show up in the exam room and say, “Doc, I’m worried.”
Nope. Never say that. Especially if you’re a woman. If you’re a woman, you don’t want them seeing you as anything but cool, collected, professional. Steer clear of emotions. I have cried only once in front of a doctor these last four years. I am cheerful, calm, rational. At least, I pretend to be. Keep that mask up at all times. Even with women doctors. They went through the same system, the system that still, deep down, believes in hysteria. Don’t give them “hysterics.” Don’t do it. There’s no coming back from it.
Keep emotion out of it. Don’t say, “I think it’s getting worse.” That won’t work. “I think?” Bah. What’s a doctor going to make out of you hedging and guessing?
The only thing for you to say is, “The days with X symptom have increased from 11 a month to 23.”
Doctors will act on that, all right. They’ll spring into action because that kind of increase is statistically significant. They’ve read a lot about that, and they’re ready for it. This is what they’re waiting for.
* * *
Doctors aren’t bad people. Quite the opposite. Most of the physicians I’ve met are deeply ethical, caring individuals who are here to help people (and yes, the status and the paycheck are nice of course). But the really good ones? They are here first and foremost to help people. You can look into a doctor’s eyes and know right away if they’re here for you. If they’re invested. If they want to see you get better. And if you don’t see that in their eyes, split. Go book someone else. Because the good ones? There are loads of them.
But there’s a cultural barrier. A communication breakdown. Doctors are people who hail from this other country, known as Med School. And subsequently, they speak another language. They have the prejudices that have been passed down in their culture. And none of the problems in their country are going to get fixed overnight just because they need to, same as ours. And doctors, let’s face it, aren’t always great communicators. That’s not the forte in their society, at least the way those of us on the outside define communication. So sometimes we have to help them a little bit. We have to use some of their language to help them understand our experience.
It takes some extra effort on our part, and yes, I know. That’s not entirely fair. I know, I know. But when your quality of life is suffering, fairness is not the priority. There isn’t time or energy for crusades. This just has to get done. And numbers will do that for you.
Best wishes on your own conversations with doctors. Remember to bring your pie charts.