The imperative of self-advocacy
And Refusing to Be Reduced
When Dignity Demands Action
Living with chronic pain is exhausting enough, but dealing with people who minimize us, and our experience, is no less exhausting and irritating. It gets so old. The energy it takes to constantly encounter such limited understanding and entitlement from people who think nothing of it cannot be understated. Nonetheless, it’s bound to happen more often than we’d like. So, what do we do with that?
First, we have to recognize what’s actually happening. When someone gaslights us by insisting that we can’t possibly know our own body, or implies that our condition isn’t real, that’s not “innocent discussion.” It’s disrespect. It’s beyond entitlement. And it reveals far more about them than it does about us. They’re showing their need to be “better than,” and it’s not a pretty trait.
People like that aren’t looking for understanding — they’re looking for control, or validation of their own worldview. That’s why it feels like such an emotional assault: because it is. Having to stand there while someone publicly speculates about your health is dehumanizing. It reduces you to a subject for debate rather than acknowledging you as a full human being.
And the truth is, we don’t owe those people any explanations. We don’t owe them an ounce of our energy. We don’t owe them the forgiveness they seek just because they get uncomfortable when called out. Sometimes the most self-respecting thing we can do is disengage completely — to refuse to give them the education, justification, or the emotional labor they’re hoping to extract.
We Don’t Owe Explanations
One of the hardest lessons is realizing we don’t owe anyone an explanation for our condition, our limits, or our choices. People love to act like they’re entitled to a full report on our medical history, as if we’re public property. We aren’t.
When someone demands details or speculates out loud, the pressure is real, and we’re forced to react on the spot. It can feel especially disorienting because many of us were conditioned to “people-please” or smooth over discomfort. But handing over explanations we never wanted to give doesn’t buy us real understanding. It just drains us further and steals our peace.
The truth is, if someone is capable of basic respect, they’ll accept what we choose to share, no questions asked. If they can’t do that, more words certainly won’t fix it. People who are intent on reducing us to their narrow assumptions rarely change because of one conversation.
Real advocacy is knowing where our voice is best used and remembering that our greatest power lies in refusing to participate in their story about us. Standing firmly in our integrity is the best way to preserve our energy and strength.
The Cost to our Energy
People underestimate how exhausting these moments are. They think their judgments are “just words,” but for us, they’re another battle layered on top of the daily fight with pain. Being forced to defend our reality over and over chips away at our reserves, and we can’t afford to participate in that.
It’s not just the current conversation we’re grappling with, either. One nasty, dismissive comment can throw us back into every exam room where we weren’t believed, every appointment where someone rolled their eyes, every time we’ve had to prove our pain is “real enough” to matter. That history lives on in our memory, and encounters like this rip the scab open.
And then what? We’re left managing not only our physical condition, but also the emotional fallout of someone else’s ignorance. That toll is real. Those words hang in the air like a thick, toxic smog.
Here’s something we must bear in mind: We needn’t let it tempt us into shame or hiding ourselves from the world. We needn’t internalize their prejudice or let their ignorance replace our truth. Instead, we can learn how to meet those situations with ever greater confidence and fortitude, preserving our dignity at all costs.
Choosing Dignity Over Comforting Others
Too often, when someone crosses the line, the expectation shifts onto us to “be the bigger person,” to accept an apology that doesn’t change anything, or to help the offender feel less awkward. That’s not a requirement we need to take on any longer. Our job isn’t to make people comfortable after they’ve disrespected us.
Sometimes self-respect means walking away. Sometimes it means calling out the offense. And sometimes it means refusing to play the game at all — because our energy is not infinite, and we get to decide where it goes.
The truth is, if we have to fight for basic respect, that tells us everything we need to know about the person or the situation. People who value us won’t make us battle for our dignity.
So, when these moments come — and they will — we get to choose how we show up for ourselves. Not out of obligation, not out of guilt, but out of a commitment to ourselves. We can hold our ground, we can refuse to explain, we can save our energy for people and spaces that actually deserve it.
At the end of the day, chronic pain already demands more from us than most people will ever understand. We don’t have to hand over what’s left of our strength just to make someone else feel better.
Self-advocacy is not always about delivering the perfect comeback or educating others into awareness. Sometimes it’s about holding your own boundaries, even silently, with a steady inner voice that says: No. You don’t get to define me. It doesn’t matter if it feels awkward, imperfect or messy. It only matters that we do it.
Our dignity is ours to protect. And that’s non-negotiable.
With you on the journey,
Julie 💜
*chronic pain self-advocacy self-respect dignity gaslighting disrespect integrity invisible illness minimizing experience truth chronic illness dehumanizing