Things People Say to Chronically Ill People (And What We Actually Hear)

There is a particular kind of exhaustion that has nothing to do with your nervous system.

It’s the exhaustion of explaining. Of smiling through it. Of translating what is happening inside your body into something that fits inside a conversation without making everyone uncomfortable.

And then someone says something.

They mean well. They almost always mean well.

That’s what makes it so hard. The things people say to chronically ill people aren’t always the things we hear.

“You look great!”

Thank you. I did my hair today. It took everything I had, and I will need to lie down after this conversation, but yes, great hair day.

What we hear: You can’t possibly be as sick as you say you are.

“You don’t look sick.”

I know. Dysautonomia is invisible until it isn’t.

Until I’m on the floor of a grocery store because I stood up too fast.

Until you see the compression socks.

Until you notice I haven’t left the house in four months.

What we hear: Prove it.

“But you were fine yesterday.”

Yes. That’s the thing about dysautonomia — it’s not consistent. My nervous system doesn’t follow a schedule. Yesterday, my body cooperated. Today, it decided not to. I don’t get advance notice either.

What we hear: You’re faking the bad days.

“You just need to get out more.”

What they don’t see is the level of planning involved before I can go anywhere:

The weather check, because the heat can drop me, and the cold can make my pain worse.

The additional planning I need to shower, because the shower is enemy number one to someone with POTS. I need an hour to recover from my shower.

The struggle of getting around when you no longer have a driver’s license.

The fear I have of falling.

The “is there somewhere to sit” scan the moment I walk in.

The next-day recovery I need.

Most of my appointments are virtual, because getting to one is a project in itself.

Getting out more isn’t a solution. Getting out is a project.

What we hear: You’re choosing this.

“I wish I didn’t have to work. I’d finally organize my closet / travel / catch up on sleep!”

Please picture what my days REALLY look like. Not the version where I’m horizontal by choice, watching General Hospital, and eating Cheetos. The version where I’m horizontal because my heart rate says so. Where a “good day” means I made it to the kitchen and back without holding the wall. Or when I can make it more than 6 hours without throwing up (gastroparesis is a real buzzkill).

This isn’t a vacation. There is no version of this I would choose.

What we hear: You’re lucky.

“You just have to think positively.”

This one came from my mom.

Here’s what you need to know about my mom: she was queen of pessimism. Hilariously, spectacularly, lovably so. She also became disabled at a young age. My mom was a full decade younger than I was when she applied for Social Security disability benefits. She lived this. She knew what it was to have a body that wouldn’t cooperate, to fight for answers, to be dismissed.

And she still said “think positively.”

I used to find it maddening. Now I understand she was passing down the only tool she’d been given. When nobody teaches you how to survive something, you grab whatever got you through, and you hand it to the people you love.

I lost her in July 2024. I’d give anything to hear her tell me to think positively one more time.

What we hear: Your attitude is the problem.

What she meant: I love you, and I don’t know how to fix this.

What I actually need to hear

You don’t have to fix it. You can’t.

Just say:

“That sounds really hard. I’m here.”

That’s it. That’s the whole thing.

You don’t need the right words.

You need to not need me to be okay for your comfort.

And if you’ve said any of these things to someone you love, it’s okay. We know you meant well. We’re still here. We’re just tired.

💜 Lyn

If this helped you feel seen, please stick around. I talk about the real side of chronic illness — the hard parts, the human parts, and the moments that remind us we’re not alone. And if any part of this resonated, tell me which line hit you or what you wish people understood about living in a body like ours.