MCS and the Fight for Basic Accommodation

TL;DR: With Multiple Chemical Sensitivity (MCS), a huge part of the struggle isn’t just symptoms—it’s being believed, respected, and accommodated without shame. “You don’t look sick” (or “a little fragrance can’t hurt you”) can be deeply invalidating, and fragrance-free spaces should be treated like a basic access need.

MCS is often described as an invisible illness because you can look totally “fine” while your body is reacting to common exposures—like perfume/cologne, scented laundry products, air fresheners, candles, or certain cleaning products. Some medical sources also refer to this as idiopathic environmental intolerance (IEI).
Johns Hopkins overview: https://www.hopkinsmedicine.org/health/conditions-and-diseases/multiple-chemical-sensitivity
Chemical sensitivity / IEI: https://www.hopkinsmedicine.org/health/conditions-and-diseases/allergens-chemical-sensitivity

If you want to read my “why I speak up” post about chronic and invisible conditions, here it is:
https://healnomeds.com/why-we-need-to-speak-up-spreading-awareness-for-chronic-illness-invisible-conditions/

“You don’t look sick.”

People say this like it’s a compliment. But when you live with an invisible illness, it often lands like:

• “I don’t really believe you.”
• “If I can’t see it, it must not be serious.”
• “Are you sure you’re not exaggerating?”

That’s the trap with invisible illness: there isn’t always an obvious outward sign that makes people instantly switch into compassion mode. So instead of support, you often get skepticism.

The apology problem

Here’s something I wish more people understood:

With MCS, you often end up apologizing for your body.

You say things like:

• “I’m so sorry… I react to perfume.”
• “I hate to be difficult, but fragrance makes me sick.”
• “Sorry—could we not burn a candle?”

And even after you apologize, you still brace for eye rolls, jokes, defensiveness, or disbelief.

It’s exhausting to manage symptoms AND manage other people’s opinions about your symptoms.

One thing that adds to the confusion is language. People hear the word “sensitivity” and assume it means “minor.” For many of us with MCS, it’s not minor at all—exposure can be disabling. That’s why a “fragrance-free request” isn’t about preference. It’s about access and safety. I sometimes just have to say I’m allergic to fragrance to avoid confusion (even though technically MCS is not an allergy, it feels like the only language that some people can understand and respect).

“A little bit can’t hurt you.” (Yes, it can!)

One of the most invalidating things people say is:

“A little bit of fragrance can’t hurt you.”

That’s the invisible-illness version of telling someone with a serious peanut allergy, “A little bit of peanut won’t hurt you.”

You may not be able to predict someone else’s threshold—and it’s not your call to decide what their body can tolerate. The safer, kinder response is simple: believe them and help reduce exposure.

Why the peanut allergy comparison matters

This comparison helps people “get it,” because it’s about the social response.

When someone has a serious peanut allergy, people generally don’t say:

• “Just try a little.”
• “It’s all in your head.”
• “Stop being dramatic.”

Instead, there’s often a built-in culture of caution and accommodation—especially in group settings like schools and events.

I’m not saying MCS is medically identical to a peanut allergy. I’m saying the respect and accommodation culture should be.

Because the real-life outcome is similar in the way that matters most: it affects whether someone can safely participate.

No one should have to apologize for an access need.

What support actually sounds like

If someone tells you they have MCS (or they react to fragrance), you don’t need a debate. You don’t need to fully understand every detail.

You can simply say:

• “I believe you.”
• “Thanks for telling me—what helps you feel safe?”
• “Do you want me to avoid fragrance around you?”
• “If you need to step out, no explanation needed.”
• “I’d rather adjust than have you suffer.”

Those sentences are powerful because they remove doubt. And doubt is what hurts the most.

What accommodation can look like (simple, practical)

If you want to support someone with MCS, here are a few changes that can make a huge difference:

• Skip perfume/cologne when you’ll be around them.
• Don’t burn candles or use air fresheners before they come over.
• Avoid strong scented laundry products if you’ll be in close contact (hugs, car rides, sitting close).
• If you’re hosting, add a simple note: “Fragrance-free request: please skip strong scents so everyone can participate.”

That one sentence can be the difference between inclusion and isolation.

The part I want to normalize

I want a world where someone can say “Fragrance makes me sick” and the response is as normal and respectful as: “Peanuts aren’t safe for me.”

No apology required. No ridicule. No debate. Just basic human accommodation.

A small challenge for anyone reading

If someone tells you they have an invisible illness (like MCS), try swapping:

“I only put a tiny bit on, I can barely smell it…” with: “What can I do to help?” It’s simple—but it changes everything.

Sharing our experiences and helping each other survive and bring awareness to MCS

Since most people not suffering from MCS don’t even know what Chemical Sensitivity is or how severe it can be, I sometimes just say that I’l allergic to fragrance. It’s technically not an allergy, but it seems to get the point across much better than the word “sensitivity” that does not carry as much weight as the word “allergy”. What has helped you? If you’re comfortable sharing, tell me in the comments:

• Have you been dismissed with “You don’t look sick,” “It’s all in your head,” or “a little won’t hurt”?
• Have you ever felt pressured to apologize just to ask for fragrance-free space?
• What’s one thing you wish friends, family, doctors, schools, or workplaces understood?
• What is the best way that you found that you can explain your MCS to others?

You’re not alone. And if you don’t have MCS but you’re reading this to understand someone you love—thank you. A supportive comment can mean more than you know.

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Further reading

• Johns Hopkins Medicine: Multiple Chemical Sensitivity (MCS)
  https://www.hopkinsmedicine.org/health/conditions-and-diseases/multiple-chemical-sensitivity
• Johns Hopkins Medicine: Chemical Sensitivity / IEI
  https://www.hopkinsmedicine.org/health/conditions-and-diseases/allergens-chemical-sensitivity
• AAAAI (1999): Idiopathic Environmental Intolerances (IEI) position statement (PDF)
  https://www.aaaai.org/Aaaai/media/Media-Library-PDFs/Allergist%20Resources/Statements%20and%20Practice%20Parameters/Idiopathic-environmental-intolerances-1999.pdf
• Molot et al. (2023) review: “Multiple chemical sensitivity: It’s time to catch up to the science” (PubMed)
  https://pubmed.ncbi.nlm.nih.gov/37172924/