When doctors mess up

I had an incident with one of my favorite doctors recently.

He’s a headstrong physician—just like I’m a headstrong patient. Despite this, we generally work together very well. When I’m sassy and sarcastic, he usually sees that as an indicator of my good health overall. (He’s right. If I’m screaming in righteous indignation about something, it means I’m feeling well.)

This fall, I haven’t been myself. The fatigue has been unreal. I’ve been sleeping over 12 hours a day, trying to make my symptoms go away through sheer force of will. My mind keeps repeating, “something’s not right”—it feels like somewhere in my body, something is very broken and is causing a total shut down from top to bottom.

I made the rounds with all of my doctors. I went to see Dr. X (name withheld) a few weeks ago, and everything went as usual, although I felt a bit more withdrawn and tired. Then came the end of the appointment.

He then proceeded to lecture (or browbeat) me for over 15 minutes about minute things from schedules and exercise and all of the ways I was doing treatment and chronic illness wrong.

None of what he said was inherently false. But everything in his delivery was wrong for me at that specific time—and as a doctor I’ve been working with for what feels like forever, I felt tremendously let down by his approach.

“Doesn’t he know me?!” I remember saying to my mom afterwards. “I always come through in the end!”

I was heartbroken and offended to have been condescended to like a child by someone who had been treating me with the respect of an adult since I was a teenager. I felt like in this one appointment, I had done something to lose not only that respect but also his confidence in me.

My doctor had preached to me all of the things I knew up, down, left, and right: get out of the house every day, eat three meals a day, drink more water, etcetera, do these things to feel better and be healthier—I could teach a class on these basics.

I wanted to shout “I know!” right in his face. “Don’t you think I’m doing these things as much as my body is allowing me?”

My mind was shouting, “I know these things, if there’s something I’m not doing, it’s because I feel so awful!”

It made me feel like he saw me as a failure. It made me feel like I was a failure because I couldn’t do the basic things to keep myself healthy.

*

I chewed on my doctor’s words for days. (Try, weeks.) What would have been a blip on my radar had I been in a healthier, more sound place, had me anxious, hurt, and considering new doctors.

On one hand, he was just giving me “real talk.”

On the other, he was forgetting how I operate and function as a patient and as a chronically ill individual.

I have always needed doctors to meet me halfway.

I can’t pull myself out of whatever hole I’m in by myself. When I’m in a slump, I require a boost from medical intervention. But once I get that help, I can get back into the everyday habits that keep me healthy: getting out and walking around, using light box therapy, throwing in a salad here and there.

When my doctor firmly critiqued me while at my lowest and most fragile, I couldn’t take it. I’m a person who seizes on any opportunity to blame themselves, and with a half dozen incurable chronic illnesses, my life is a wide canvas to do just that. “It’s your fault you have this!” “If you didn’t do this, you wouldn’t have this.” And now my brain added in, “Dr. X thinks it’s your fault that you’re having this symptom.”

Except after weeks of processing, I can FINALLY say to myself: who the hell cares what anyone thinks besides the people in the trenches with me? The people whose opinions I care about are the ones who actively feel my pain with me and help me get up, get out of this mess until I can do it myself. The ones who help me grow, who give me blankets, pillows, and hot chocolate when I need rest, and the ones whose critique and advice is delivered in a way that that will help me, not hinder me.

I’m sick. But I work really, really hard. And in the last few weeks, I’ve pulled myself up—thanks to a boost from medicine, therapies, loved ones, and my own hard work.

I’m not “fixed,” (it’s chronic, y’all), but a few weeks ago, I couldn’t leave the house because my body was non-functional.

Last week, I was barely at home. So we’re getting somewhere.

(Thanks, to everyone who’s been a help.)

(And we’ll see what happens with Dr. X. Thankfully, he listens to the opinions of other doctors on my team. As of now, I have what I need from physicians.)