On surviving chronic pain, invisible symptoms, and the exhausting art of self-advocacy.
There are entire chapters of my life I’ve never spoken aloud in a doctor’s office. Not because they didn’t matter, but because I learned—early and often—that survival sometimes means shrinking the truth just enough to be believed.
When you live with chronic illness, especially the kind that doesn’t show up on scans or tests or faces, you become fluent in a language of strategic omission. You start editing yourself before you even walk in. You practice sounding credible in your exhaustion. You rehearse how to say "I'm in pain" without sounding hysterical. You learn how to present as someone worthy of care in fifteen minutes or less.
And that’s if you’re lucky.
The truth is, I’ve downplayed symptoms that kept me in bed for days. I’ve smiled through flares that made it hard to walk. I’ve told doctors I was “doing okay” when what I really meant was “I haven’t felt safe in my body for months.” Because I’ve learned that once you say too much, once you appear too complicated, too emotional, too unsure, they start to look at the clock. Or worse, they start to doubt you.
Invisible illness comes with an invisible burden: the need to constantly translate your lived experience into something legible to people who don’t live inside it. And in medical spaces, that translation can mean the difference between getting help and getting written off.
Self-advocacy, I’ve discovered, is not just about speaking up. It’s about navigating a system that wasn’t built for people like me. It’s knowing when to push and when to pause. It’s learning how to hold your ground while also holding your body together. It’s deciding, sometimes in real time, which part of your pain is worth prioritizing, and which part will have to wait until the next visit—or never be spoken aloud at all.
I’ve had to become fluent in my own data. I’ve had to bring research, records, and my own language to every appointment. I’ve had to be calm when I wanted to scream. I’ve had to explain what it feels like to live inside a burning house while someone stands at the door with a clipboard asking if I’ve tried stretching.
There’s a learning curve that no one talks about. How to advocate for your health without being labeled “difficult.” How to talk about fatigue that isn’t solved by rest. How to describe pain that doesn’t show up on any chart. How to make someone believe you when you barely have the energy to believe in yourself.
I know I’m not alone in this.
I know there are millions of people, mostly women, mostly people of color, mostly folks whose bodies do not align with the textbook version of illness, who are asked to prove their pain before they’re ever offered relief. Who walk into appointments hoping for answers and leave with instructions to come back if it gets worse. It’s already worse. It’s been worse.
So no, I don’t say everything. Not anymore. I say what I have the energy to say. I speak what I think might be heard. I tell the truth, even when I have to cut it into smaller pieces to make it easier to swallow.
But I write the rest. I carry the rest. I live the rest.
Because even if I can’t say it in the exam room, I know it still matters.
And I know I’m not the only one who’s been forced to choose between being honest and being helped.
What’s something you’ve stopped saying at the doctor’s office?
Whether it’s a symptom, a fear, or the full truth of your exhaustion—name it here. No translation. No performance. Just the version only you’ve carried.