“You Don’t Look Sick”: Responses That Educate, Not Inflame

If you live with fibromyalgia, you’ve almost certainly heard it: “But you don’t look sick.”

It’s usually said with a smile, sometimes with genuine surprise, sometimes with doubt. People think it’s a compliment. What it often feels like, though, is dismissal—a denial of the daily pain, fatigue, and invisible battles we fight.

When I first heard it, I froze. My body screamed with frustration. My brain fog made me stumble through awkward explanations. Sometimes I snapped. Other times I shut down. Neither response left me feeling understood.

Over time, I realized I needed a different approach: responses that educate without inflaming, inform without exhausting, and protect my peace without silencing my truth.

Here’s what I’ve learned about handling “you don’t look sick” with clarity, calm, and power.

Why This Phrase Hurts

It dismisses invisible illness. Just because fibro doesn’t show on the outside doesn’t mean it isn’t real.
It shifts the burden to us. Suddenly we feel like we need to “prove” our pain.
It triggers guilt or shame. We wonder if we’re overreacting or too sensitive.

The phrase may be unintentional, but it cuts deep. That’s why having ready responses matters.

The Core Response Goals

When I respond now, I keep three goals in mind:

Educate lightly. Share a fact or perspective.
Set boundaries. Make it clear I don’t need to prove myself.
Stay calm. Protect my spoons by avoiding heated arguments.

Response Styles You Can Choose

Depending on the situation—and your energy—you can pick different response styles.

1. The Short and Sweet Response

For moments when you don’t have energy to educate:

“That’s the thing about invisible illnesses—you can’t always see them.”
“Looks can be deceiving.”

Simple, non-combative, and it closes the conversation.

2. The Gentle Educator Response

When the person seems genuinely curious:

“Fibromyalgia doesn’t show on the outside, but it affects my daily life in big ways.”
“A lot of chronic illnesses are invisible—you can’t see fatigue or pain levels.”

This plants a seed of awareness without overwhelming.

3. The Boundary-Setting Response

For people who keep repeating dismissive comments:

“I know it’s hard to understand, but just because I don’t look sick doesn’t mean I’m not struggling. I’d appreciate if you could trust what I tell you about my health.”

Clear, respectful, but firm.

4. The Metaphor Response

Metaphors help people understand what they can’t see:

“Think of it like carrying an invisible backpack full of bricks. Some days it’s lighter, some days heavier, but it’s always there.”
“It’s like my body runs on half-battery all the time, no matter how much I rest.”

These make fibro more relatable.

5. The Humor Response

For friends or light situations:

“Yeah, I left my ‘sick look’ at home today.”
“It’s the world’s worst magic trick—I look fine while I’m falling apart inside.”

Humor defuses tension while still hinting at reality.

Situational Examples

At work: “I do my best to look put together, but managing fibromyalgia is a full-time job behind the scenes.”
With family: “I know I don’t look sick, but trust me—if pain were visible, you’d see it every day.”
With friends: “It’s true, I don’t look sick. That’s why invisible illnesses are so tricky.”
With strangers: “Looks don’t tell the whole story.”

Internal Work: Protecting Your Peace

The hardest part isn’t responding—it’s dealing with the emotional hit. Here’s how I protect myself:

Reframe: Remind myself most people mean no harm.
Detach: Their ignorance isn’t my responsibility to fix every time.
Choose energy battles: Not every comment deserves a response.
Affirm: “My illness is real. My experience is valid. I don’t need outside validation.”

What Happened When I Shifted My Responses

Before:

I spiraled into anger or shame.
Conversations turned into debates.
I walked away feeling smaller.

After:

I responded calmly, with control.
I educated when I had spoons, deflected when I didn’t.
I walked away feeling steady, not defeated.

It didn’t stop people from saying “you don’t look sick.” But it stopped the phrase from wounding me every time.

FAQs

1. Should I always respond?
No. Sometimes silence is the healthiest choice.

2. What if someone insists I “look fine”?
Repeat calmly: “Looks don’t reflect how my body feels. I need you to trust my words over appearances.”

3. How do I handle it at work without sounding defensive?
Frame it factually: “Invisible conditions like fibro don’t show outwardly, but they impact stamina and pain.”

4. What if humor feels dismissive of my reality?
Skip it. Use educator or boundary scripts instead.

5. Will people ever stop saying it?
Not always. But the right responses protect your peace.

6. How do I stop feeling guilty about looking “too healthy”?
Remember: appearance ≠ truth. Managing to look okay is survival, not deception.

Final Thoughts

“You don’t look sick” is one of the most common—and most painful—phrases fibro patients hear. But with prepared scripts, you can shift from feeling dismissed to feeling empowered. Some days you’ll educate. Some days you’ll set boundaries. Some days you’ll just let it slide. All are valid.

The key is this: you don’t owe anyone proof. Your illness is real, your limits are real, and your worth was never tied to whether or not people can see your pain.