Imagine what it would be like if your doctor really knew what you were thinking. Imagine if, almost daily, she knew how you were doing: which days were bad and which were good, when your joints were hurting like fire and when you felt like a million bucks.
I got another "call" from my rheumatologist last week... and as it turns out, she knows things I haven't told her. She knows when I'm hurting, and when I'm exhausted. She knows that the dactylitis in my toe is killing me, and that last month I was so wiped out from a flare that I lost my creative fire. And she's concerned, because she thinks I should be doing better with my psoriatic arthritis.
The crazy thing is, until she called, I thought she thought I was doing just fine.
During the past 2 weeks, we both realized that the person she sees in her office for 15 minutes every 2 months is different from the person I am during the rest of my life. What changed?
She started reading my blog. Faithfully.
(An aside: Hi Dr. _____, I hope you're having a good day! See you for my infusion next month!).
It was a revelation to us that we had so deeply miscommunicated about what our goals were for my health. As a consequence, we have both done some thinking and talking about how we view each other, as "patient" and "doctor", and how we view other "patients" and "doctors" in our lives.
I don't think I gloss things over with my doctors. I tell the truth about where my pain is, and how bad. And she doesn't think she glosses over things in her visits (and as you all know, I think she walks on water).
But somehow, during the our conversations, we miscommuncated about what we were shooting for. She talks about "remission" - and to her that means symptom-free, a normal life. To me "remission" means better. She talks about "better" and thinks symptom-free, normal life. To me "better" means I can get down the stairs a bit faster than this summer.
I've become so accustomed to pain that I realize that I don't think about the little things anymore. I don't sweat the small stuff. I've become numb to the days when my hands are so stiff I can't type for an hour in the morning, or my hips ache when I bend down to pick up a Lego. At least I can ride my bike, right? So to me I'm "better".
But to her, I'm not.
She told me she has gotten sad thinking about her other patients that she doesn't really know as well as she's gotten to know me, because of my writing, and that she can't help as well as she's trying to help me. She told me she's been thinking hard about how she practices medicine.
I'll save our new treatment plan for another blog post (My hands aren't working so well today, Dr. _____).
But before I stop, I just want to say to all of you patients and physicians out there: sweat the small stuff. Don't give up on getting to "better", and even more important, make sure you both agree on what "better" looks like. Make sure you both have the same goal. Talk.
And write your own blog. It works.