Imagine that you want to try a new shampoo, but you’re worried you might break out in hives.
Or it might be that you would love to live in this fab new apartment, but you are not sure you’ll have an easy time breathing there.
Maybe you’re excited about your first date with a cute person, but you’re nervous that you might throw up on them.
Perhaps you want to get some fabulous stickers at the craft store, but you are concerned you’ll get a migraine.
Or possibly you’d like to take the subway, but don’t want to risk a seizure.
What do all these things have in common?
Hives, confusion, dizziness, coughing/trouble breathing, migraines, vomiting, and/or seizures are all potential symptoms that result from exposure to chemicals and fragrances.
Chemical/fragrance sensitivities and reactions to them vary from person to person — not just in severity, but also in what triggers reactions. Some people can experience minimal exposure relatively unscathed, while others literally cannot leave their houses.
It’s a real condition and it has real accessibility consequences for people who have it.
It’s very important for everyone to be aware of the chemicals/fragrances that are on their bodies and in their environments so people with MCS can estimate the potential level of damage.
It’s easy to think that someone might not be having a reaction right then — but they might not have sensed the chemical/fragrance and might pay for it with illness later.
People need to be able to consent to what they will be exposing their bodies to — especially when it can have such severe consequences.
Sometimes people go through all sorts of internal resistance when they first encounter the idea of chemical/fragrance-free accessibility. I and other folks with MCS have definitely heard versions of these before.
Some of that resistance manifests in phrases that have unintentional ableist implications. Below are some of the phrases people say, and some things to consider in response.
1. ‘This Is for My Self-Expression’
Self-expression is super important and for many of us it’s something that’s policed and denied in so many different ways. Your self-expression is hard-earned and it makes sense that you guard it well.
Please believe me when I say that I have no interest in dictating your self-expression. I do, however, have an interest in being able to breathe when I’m around you.
Many products have fragrance-free alternatives that still allow for self-care.
I don’t want to micromanage your life. I do have a desire to live mine though, and the thing about ableism is that it often denies people with disabilities access to the world because it’s decided that some needs just are too much to accommodate.
At the same time, help that able-bodied people use (such as getting service at a restaurant, wearing glasses, or babies getting their diapers changed) are considered perfectly reasonable.
Ableism dictates what is reasonable assistance and what is an undue burden.
The bottom line is, perfumes and fragrances can be super important for some people. But, for the most part, it’s something that’s best worn and used in the privacy of your home.
2. ‘You’re Ruining My Personal Space’
I understand that making changes might be inconvenient and it might feel invasive.
But actually, the opposite is happening.
You are literally ruining my ability to be healthy in my body when you fill this space with chemicals and/or fragrances.
3. ‘I Want to Invite You, But There Will Be [Triggering Scent] – Just a Little Though!’
You are welcome to have an event where there will be triggering scents. You should understand that I am unable to come to those events. Please don’t take it personally, or decide what I am or am not capable of handling.
You don’t get to decide how much is too much or how little is too little. Only I can figure out what’s best for my body.
For many of us, whether there’s just a little or a lot of a chemical doesn’t change the fact that the space is inaccessible.
When I say no, there’s no reason to be defensive. I didn’t have an option.
I struggle with this one, especially with folks I know who smoke. They are completely free to smoke, but also their smoking — especially in front of me, but also when smoke is in their clothes — can make it hard for me to be healthy around them.
Addiction is a real thing, but so is MCS.
When I can’t be around your secondhand smoke, I’m not judging you. I’m just taking care of myself.
4. ‘But You Didn’t Notice’ (Or ‘You Were Fine’)
If I didn’t notice a scent or chemical, that doesn’t mean that it didn’t affect me negatively. Sometimes they can make me sick after the fact. Or maybe I’m trying to put on a good face as I’m reacting.
For someone like me, who is less scent-sitive, it’s possible it didn’t negatively affect me — this time. But it could negatively affect me next time. And you should respect my accessibility and bodily needs enough to follow the chemical/scent boundaries I’ve set up instead of trying to sneak around them.
Bottom line: You don’t know if I was fine. You are telling me I was fine.
The only person who knows how I am is me.
5. ‘Do You Ever Leave Your House?’
I do. I’m able to, but some folks who have severe sensitivities don’t. Finding accessible housing with MCS can be a whole other kettle of fish, too.
Sounding shocked or saying this in a passive-aggressive way is really counterproductive. Because housing and being in the world are things that can be very hard for people with MCS.
6. ‘You’re Making This Up’
Did I make up the time my landlord sprayed our house with chemicals and I couldn’t return? Did my friend make up the time they vomited on an airplane when sitting near a person wearing lots of perfume?
Just because our symptoms aren’t external (sometimes) don’t mean that they don’t exist.
JK! You’re right! MCS is actually just a grab at popularity. We’re making this up so we can become famous glittery stars! And so we can tell you to wash your armpits of that scented deodorant more often, becayse it’s the most scintillating conversation starter ever! Lolz.
7. ‘I Didn’t Realize You Were So Sensitive’
Usually, people defend this statement by saying, “Sensitive… to chemicals! That’s what I meant!”
And on that surface level, they’re right. We are sensitive to chemicals. That’s why we have multiple chemical/fragrance sensitivities.
But underneath that, they’re discounting MCS by implying that this is something we’re “oversensitive” to.
We have a right to be in our bodies and to be healthy. We’re not being “too sensitive” when we are asking to have a space where we can breathe.
8. ‘But No One Else Is Bothered by It!’
First, you don’t know that. Often, outspoken people with MCS are few and far between, or the people who are worst affected.
Second, even if I were the only person in the room who was bothered by it, are you saying that because it’s just me, I don’t deserve access to this space?
Because that’s super ableist.
Here’s What You Can Do Instead
Ask us what we need, and don’t judge the answer. Remember, we know our needs best. And what we need might change at different times. Your job is to respect that.
Instead of saying, “But my friend has severe MCS and is fine with essential oils!” recognize that we all have different sensitivities and be like, “Okay, how can I support you with that?”
In public, always accommodate as many people as possible by not wearing any chemicals/fragrances. There are a lot of reasons people use scents and chemicals, but most of them have alternatives that can make a huge difference for people with MCS.
As best you can, try to reduce or eliminate your use of chemicals/fragrances.
Below is a list of common items that can trigger many people with MCS. Not everyone with MCS reacts to everything on this list, but everything on this list does cause reactions for someone.
Air fresheners: Think bathroom trips where you try to hold your breath the entire time or have a coughing fit. No fun!
Cigarette/marijuana smoke: So addiction, or coping mechanisms, or any other reasons people smoke, isn’t something that I’m here to judge or try to exert my own control over. That can also be ableist! But it is something that definitely triggers MCS symptoms for me, and other folks with more severe sensitivities may not be as able to semi-tolerate it as I am.
Cleaning products: You can buy specifically scent-free products, and an affordable vinegar solution serves many household cleaning needs. Chemical cleaning products can make spaces intolerable for days or weeks after they’ve been applied in a space.
Deodorant: You can use unscented deodorant, or alternatives like witch hazel, rubbing alcohol, or baking soda. You also can make your own deodorant.
Essential oils: Often people assume that because these oils are “natural,” they won’t affect people with MCS. But some people with MCS do have reactions to essential oils such as lavender, rose, and peppermint.
Hair products: Hairspray is definitely going to cause a reaction. Even if it’s unscented, it’s still extremely chemically. Finding unscented shampoo/mousse/other hair products can be difficult depending on your hair type. Leah Lakshmi Piepzna Samarasinha’s “Fragrance Free Femme of Color” explores some good alternatives to many products for people of color.
Laundry detergent and drier sheets: Just stop using drier sheets (you can use wool balls as alternatives). If you have been using scented detergent, keep in mind that it will probably take many washes to remove scent from your clothes. To speed this process, add baking soda with your unscented detergent. Also, keep in mind that it can be hard to be completely fragrance-free without access to a fragrance-free washing machine.
Makeup: Makeup can be a vital part of many people’s self-expression, and it can be the most difficult and expensive to find fragrance-free. If you need to go 100% fragrance free, you may not be able to wear much makeup. Keep this in mind if you will be interacting with someone with severe MCS.
Nail polish and polish remover: There now are low-toxin nail polishes, but there are no fragrance-free ones. Don’t use nail polish or nail polish remover anytime near being in a space that’s 100% fragrance free. If you’re going to a low-scent space, it’s best to do your nails a few days in advance.
Soap: Think about all those hand soaps in your home or in public bathrooms — very few of them are fragrance free. If you were using a scented soap recently, make sure you either wash it off or wait a while before interacting with someone with MCS. And please make fragrance-free soaps available in your bathrooms.
Aftershave, bubble solution, dish soap, incense, insect repellent, lotion, paint, perfume/cologne, scented candles, spray paint, sunscreen, varnish, and white-board markers (among many other things) are all products that also have a lot of scent. Of course, you can’t get fragrance-free perfume, but you can get low- or no-scent versions of many other products.
Some other scented items also are about accommodating other disabilities. Products such as scented diapers or aromatherapy — as well some of the items above, which can help to assuage a variety of mental illnesses — can be vital for folks’ self-care and healing.
It may mean that those folks can’t share spaces with people with MCS.
It definitely means making sure that the person with MCS knows that they might be exposed to scents, and making sure that they can make a choice that best fits their bodily autonomy.
Whew – that’s a lot of stuff! It can be overwhelming just to think about going fragrance free. Just do as much as you can, and be honest when you aren’t sure if you’re completely scent-free.
It’s much better to be honest and thus allow someone with MCS be able to take the space they need to stay safe, than to be like, “Yeah, I’m pretty fragrance free, I think…” That’s not so reassuring.
Ultimately, supporting those of us with MCS is about making sure that all of us can physically be in the room. It’s about making sure that the people we love are able to show up. It’s another way of showing our care for each other.
Be the person who acts in solidarity with us by asking ahead of time if the event is fragrance-free and providing materials for people to understand what that truly means. Ask the rigorous questions some of us need in order to be able to safely go out in public.
Because it gets really exhausting when it’s just us.
MCS should be treated with as much credibility and respect as any other allergy should be. It’s a real problem and needs to be seen as such.
Because we all have a right both to our bodies and to access the wider world.
Thanks for doing your part to make the world a little bit more accessible.
Adrian Ballou is a Contributing Writer for Everyday Feminism. A genderqueer writer, artist, activist, and educator who does youth development work both inside and outside the classroom, they particularly enjoy writing and facilitating social justice education and youth organizing curriculum. To learn more about their consulting and speaking work, check them out here. In their free time, they cook lots of food, sing songs, make art, and practice their Spanish, Hindi, and Urdu. Read their articles here.