[00:00:00] Aaron Goodman: You are listening to the Chemical Sensitivity Podcast. I'm host and podcast creator Aaron Goodman.

Years ago, I developed severe Multiple Chemical Sensitivity. After being exposed to pesticide in my apartment. I was working in Bangkok, and every week or so, a man walked up and down the halls in the apartment building, spraying pesticide from a long metal canister.

I later learned he had access to my suite and sprayed inside. My reactions were intense. I became extremely agitated. My mind went blank, and I struggled for words. My lips and tongue flared up. My eyes went dry and I was not myself. I started to react to all kinds of chemicals wherever I went—air freshener, paint, construction materials, perfume, and a lot more.

I struggled to do my job, so I began searching for information. It was 2007, and one of the few sources of information I found online was MCS America, an organization founded by Lourdes Salvador. The group no longer has a presence online. The website had clear and excellent information about the illness, chemical avoidance, safe personal care products, and cleaning products.

I had a lot more questions. I reached out to Lourdes. Each time, I felt guilty thinking I must have been one of so many others seeking answers. But she always emailed back with helpful suggestions.

I had the impression that she and others were pushing back against an overwhelming amount of misinformation and ignorance about the illness. Doctors weren’t talking about it. A small number of researchers were doing research on MCS, but not many were making vital information readily available to the masses.

Today, we’re fortunate. Many individuals have stepped up, engaged in creative activism in all kinds of ways. It takes guts to claim this illness, because each time we do, we know someone will judge us because they’re ill-informed. And most do this activism work without seeking anything in return.

In this episode of the Chemical Sensitivity Podcast, you’ll hear me in conversation with four MCS advocates in the US and Canada who each do meaningful, innovative work to help inform people about the illness.

But before you hear our chat, I want to mention a few others whose work has helped create awareness of MCS. They’re heroes.

In the 1950s, American physician and allergist Theron Randolph, who died in 1995, developed the concept of multiple chemical sensitivity. He’s often referred to as the founder of environmental medicine, but his work was met with resistance. Many allergists and immunologists criticized his theories.

Randolph’s pioneering medicine led him to be ousted from his role as a professor at Northwestern University in the US. Randolph went on to create the Society for Clinical Ecology in 1965, now known as the American Academy of Environmental Medicine. Its mandate is to support doctors who work in environmental medicine and advance Randolph’s mission, but it still draws criticism.

The late William Rea, a heart surgeon who developed MCS, went on to found the Dallas Environmental Health Clinic.

Pamela Reed Gibson is a professor in psychology at James Madison University in Virginia in the US. She’s written a lot about MCS and examined how folks with the illness are often isolated, struggle to get healthcare, and are too often denied vital accommodations.

Alison Johnson wrote books and made films about MCS, Gulf War Syndrome, the impacts of toxic exposures, the attacks of September 11th, and fragrance-free workplaces.

Dr. Claudia Miller and colleagues have conducted groundbreaking research on MCS and toxicant-induced loss of tolerance—TILT—for decades.

The late Marilyn Brockman Hoffman, who coined the term DELTA, described the way her health dramatically changed after she was exposed to toxic mold and other toxins. As a researcher and writer, Ms. Hoffman explored MCS, which she lived with, in a deep way.

The Marilyn Brockman Hoffman Foundation generously supports the work we do on this podcast and champions research related to MCS.

And I’m gonna leave you with the words that Maria Rizzo, a woman in Sydney, Australia, who died in 2020, I believe, wrote on her Facebook page:

“My workers’ compensation case was won and paid out based on brain injury I received from working with toxic chemicals used to make and sculpture acrylic nails and hairdressing chemicals. I would leave work with a taste of acetone in my mouth. No one believed me back then.”

It is thanks to people like Maria and every individual who shares their lived experiences and asks for accommodations and change that awareness of MCS is growing. The work of advocacy can feel like a heavy burden, and we can’t do this alone. But we can do it together.

In this episode, I’m speaking with two women in the US and two women in Canada. All have severe MCS and are activists when it comes to the illness—creating awareness and calling for change in unique and important ways.

You’ll hear them talk about their challenges with MCS, why they decided to engage in activism, how they respond to disbelievers and ask people to choose safer, fragrance-free products, as well as their hopes for the future.

Thank you so much to all of you for joining me. Let’s have a brief intro round just so folks know who’s on the call.

[00:05:56] Marie LeBlanc: I’m Marie LeBlanc. I’m an artist originally from Manitoba. I’m now based in Alberta, and I explore themes of landscape, isolation, and health through photography, film, and projection performance. So I’ve done a lot of art shows and advocacy related to chemical sensitivities.

[00:06:14] Linda Taper: Hi, my name is Linda Taper. I live in the Blue Ridge Mountains of Virginia. Luckily, I’m surrounded by nature, and that is my saving grace. I’ve had MCS a little over a decade, but I’m fairly certain my body had been trying to alert me to it for many years before the realization came to be.

[00:06:37] Jacqueline Rice: Hi, my name is Jacqueline Rice. I live in Milwaukee, Wisconsin on Lake Michigan. I’ve had MCS—I know the exact date—October 25th, 2003, when I got acute carbon monoxide poisoning. That very next day, I was reacting to light and smells and noise, and it evolved from there.

[00:07:02] Shelley Petit: I live in Fredericton, New Brunswick. I have been—I’ve had MCS for probably 15-plus years that I’ve been aware of it, although I was like most of us, continually gaslit by the medical system and told I was just—it was in my head or I was trying to avoid working, until I collapsed at work.

Through advocacy work, I’ve been advocating with the New Brunswick Coalition of Persons with Disabilities since 2020 when I had to stop working. I’m now the chair, and I also work with the Environmental Health Association of Quebec to do more promotion for MCS and the Accessible Housing Network of Canada, where we’ve actually been able to get some upcoming building code changes starting in 2030. So it’s slowly starting to change.

[00:07:58] Aaron Goodman: Shelley, do you want to talk a little bit about how you developed MCS?

[00:08:03] Shelley Petit: Yeah, so I developed MCS as a teacher. And one of the schools that I worked in for about five years had such a mold problem in it that we had to scrape mushrooms off the wall before we took our classes into the library.

But according to the district, it was just fine. The air quality was fine. There was nothing wrong.

Both myself and another teacher—she lost her voice with vocal cord dysmorphia and is unable to this day to speak—and I would get migraines and sick and prone to breathing issues. So they transferred me schools after five years to a new school where, when it rained, mold ran down the walls with the rain. So it wasn’t much better.

Because the newest school in our district prior to 2020 was from 1970. So nothing is new.

And then I worked there for about nine years, and that’s when things got really bad. Middle school kids—perfume, markers, the whole shebang. And I started collapsing at work continuously. The students had a protocol to follow and everything like that, but it just—they didn’t get it right.

You say, “I’m not wearing perfume,” but it’s not the perfume. It’s the makeup. It’s the scented laundry products. It is just everything—including the products that they use in the school, the different markers, the cleaning products, everything.

So then they sent me to a smaller school where they were intentionally trying to remove me from the system before something really serious happened. But it was too late. I collapsed at work and I stopped breathing that day. That led my heart to stop, and luckily there was an ambulance across the street on break and they were able to start my heart again.

So it was not a pleasant day, and that was the last day I ever worked.

And, you know, we know it’s from the mold and the chemicals in the school system, but the district has yet to acknowledge that.

And it’s taken so much from me. It took my volunteer time with Girl Guides. It took my volunteer time with Let’s Talk Science—’cause I’m a geeky teacher and I love doing science projects. It took my time away from me and my kids doing things together. And it just stole the most simple pleasures in life.

I would do just about anything to be able to go out to a theater once a year and see a movie. Or go have a coffee in public with friends. Like—it’s a tragedy, because we have no control over these chemicals in the world around us.

[00:10:36] Aaron Goodman: It really limits your ability to leave the home.

[00:10:40] Shelley Petit: Oh, absolutely. And I’m in a special case now because I’m fighting cancer as well, so that’s left me really struggling.

But on a positive note, the healthcare system in New Brunswick has made some really big progress in the last two years on MCS. My file is marked. They know what I have. They know not to wear anything. And although I’ve never taken my mask off, Norm is always there with me for protection. And he said, “I’m sure you could have your mask off in here, it’s—that the air is that pure.”

[00:11:15] Aaron Goodman: Is he your husband? Partner?

[00:11:16] Shelley Petit: Partner. Yeah. Mm-hmm. And he’s been amazed at how well the hospital’s been doing. So—small gains, but I’ll take them.

[00:11:26] Aaron Goodman: Well, thank you so much for sharing. Marie, do you want to talk a little bit about how you developed MCS?

[00:11:33] Marie LeBlanc: Um, yes. I was sick when I was born. I was born two months early, and I had a twin sister, and she didn’t make it. But I was born in a pulp mill town, and I was always sick. I didn’t know what was wrong.

Then I went to university, and I lived in the dorms there, and they were really moldy. Everybody had water fights, you know—things like that where there was always water all over the floor.

So I started getting even sicker. And I was going for surgery after surgery, and then they were giving me medications for depression—all these different things. And then after I moved out of there, I moved into a building where they were spraying pesticides like crazy, ’cause there were cockroaches, different things in the buildings in Winnipeg.

So that just made everything worse. And then I got bit by a tick. So everything just—there wasn’t one thing, but everything just added up.

People didn’t believe me. Said I couldn’t be where there’s pets. Said I couldn’t be where there’s fragrances. And I had a really hard time concentrating in university, even though I was on the Dean’s Honours List—which I still don’t understand how that ever happened. ’Cause I studied so hard.

I studied hard even while I was waiting for surgical procedures, while I was on whatever medication they gave me. I studied and studied like you wouldn’t believe, and people couldn’t believe that I actually got good marks considering how much I missed in classes.

And then in—I think it was 2013—I moved into a building that was leaking urine and feces behind the walls. And I brought it up with the landlord and I received an eviction notice. But I had nowhere to go. Nobody wanted to help me look for another place again.

So in the end, I decided that I’m just going to leave and pretty much leave everything—most everything—behind. So it was really hard. And then I started couch surfing after that.

And as a person with chemical sensitivities, that’s really hard. So I—you know, where there’s vapes and mold—and that’s when I actually kind of started more of my advocacy, because I started finding things on the internet of other people experiencing the same things.

Because there were no doctors in Manitoba to help me. I had already gone to Nova Scotia to be diagnosed in maybe 2011 or 2012 or something. And then I came back, and it was quite the fight just to get disability to cover for me to go to Nova Scotia.

So I came back and, of course, the biggest thing was I needed the proper housing. And I needed magnesium IV treatments. And I couldn’t afford those, and they could not be covered. And I couldn’t get the right housing. So that made it even harder for me.

And at that point, I had gotten a van. And the only reason I got the van was because I was in a really scary situation where I had my life threatened. So I got the van. So then I stayed in someone’s room so I didn’t freeze to death—in a room in someone’s place.

And then I got kidney failure. And my environmental doctor and I knew that it was the environment. So what I did was decided not to go into emergency, because I really didn’t need another surgery or something else wrong with me, when it was just my environment.

[00:14:42] Aaron Goodman: Linda, do you want to talk more about your experience developing MCS?

[00:14:48] Linda Taper: Sure. I think my body was trying to tell me for years that I was chemically sensitive.

I was constantly being exposed to fragrance chemicals. I even used them myself because I was raised thinking they were safe. I had lots of illnesses that just started happening—and repeatedly happening. And I’d go to doctors, and I would be told, “All your bloodwork is fine.” “We don’t see anything wrong.” “Oh, well, you must be depressed. You must be anxious.”

So then I went to a psychiatrist and they told me that I had severe depression, severe anxiety, severe ADHD, and possibly severe IBS and severe insomnia. And I’m like, “Oh wow. I just have a severe existence, huh?”

And it just kept escalating from there.

And I got rid of toxic products—anything with fragrances and other toxins—and I stopped eating highly processed foods and would only eat whole foods. And we started growing a lot of our own stuff, and I just started paying attention to that.

And I worked with a detox specialist who had been highly trained and did some detoxes and cleanses and just did all of this cleansing and stuff.

Well, I find relief whenever I’m not exposed. I feel fairly normal and fairly healthy.

We don’t live really close to people, but if I go outside and someone’s doing their laundry and the fumes are riding the breeze into my yard, I have to come back in or I have to go around and close all the windows. Or like the smoke from bonfires or barbecues or people’s chimneys who heat with wood—yeah.

But once I’m exposed, then it could take a day, a couple of days, a week, or whatever to recover from that.

[00:16:39] Aaron Goodman: Of course. I hear you. Jacqueline, anything you’d like to share about your developing MCS?

[00:16:47] Jacqueline Rice: Oh—besides the acute carbon monoxide poisoning, the problem was, if anyone ever gets carbon monoxide poisoning, make sure you’re treated appropriately. I was discharged while I was still symptomatic.

The carbon monoxide goes to your heart and your brain within 24 hours. So it had already done the neurological damage. It’s neurological in my case, and it’s very clear-cut.

I always clarify to people—I don’t have any other allergies. I don’t have food allergies, I don’t have problems with pets, pollen, et cetera. Only toxins. And of course, in minute amounts.

I’ve been an activist in small and big ways since then—mostly small. But I try to have a sense of humor about it.

And I also try to do things like—I do storytelling. I’ve done storytelling events here in town in Milwaukee. And we have a group called Ex Fabula, which is kind of like The Moth, but our local group. Yeah.

And I write six-word memoirs. One of them I did was: “Fragrance spree is the new black.”

But I try to create awareness that way, as well as through social media and whatever. But I’m big on creating awareness because I can’t believe how many people are unaware of the problems in the products they use.

Also, I am amazed—I was in a bank a few months ago, and somebody was in there and they reeked of fragrance. And I said something to the teller. Not only she, but the other two women all chimed in that they were sick from the woman’s fragrance.

One said she always gets migraines. The other said she just felt like she had brain fog. And the other—whatever. So all four of us that were in there were affected.

I go to a health food store—I just bought some stuff—and everything that I brought home, it must have been near something, because it smelled of some kind of soapy product.

And that’s really a problem, because how can you even shop at a healthy place if you can’t be assured that everything in there hasn’t been permeated?

[00:18:39] Aaron Goodman: Yeah. It’s really interesting to hear you, Jacqueline, talk about your activism—and that for you, it manifests in your day-to-day, in your interactions with people you meet. And there’s an educational element there.

Yeah, and you mentioned talking about allergies versus chemical sensitivity. How do you handle that one?

[00:19:00] Jacqueline Rice: When I explain it to people, I say that my reactions are similar to people who have allergies.

My main reaction is—and it’s instantaneous—I have trouble swallowing. I get phlegm buildup. I also get brain fog. And I get a few other things.

And I explain it to people by saying that my symptoms are similar to people who react to allergens, but I am only reacting to toxins.

And I’ve been—I don’t want to say lucky—but perhaps that’s what people would call it. My entire family’s on board. Most of my friends are on board. No one has ever said they don’t, quote-unquote, “get it.”

And now, unfortunately, I have a 31-year-old niece who just became one of us. She had a chronic exposure, and that has broken my heart, because she’s 31 and she is where I was 20 years ago.

So I’m doing this for her.


[00:19:53] Aaron Goodman: I hear you. Shelley, would you like to talk a little bit about your activism?

[00:19:58] Shelley Petit: Yeah. So the bulk of my work is with the New Brunswick Coalition of Persons with Disabilities. We’ve really been working hard with the provincial government for all forms of disabilities. We feel like we’re there to help the people who’ve fallen through the cracks of the established system. And there’s a lot of us that fall through the cracks—especially with the invisible disability.

The province—they understand what MCS is. It’s a recognized disability here in New Brunswick. We’re pushing right now for a basic income for persons with disabilities, which I’m not allowed to release the date yet, but it’s to come in sooner than later.

We’ve also gotten the government to agree that all public housing from here on in must be universally designed housing using zero and low-VOC products when possible, because they’re understanding that this is not great for people.

I’ve been doing a lot of my work there, but also with some work outside of that with the Accessible Housing Network, where we’ve really been pushing for building code changes.

But most recently, there’s a new—I guess it’s not a new company—but they’ve now opened a storefront. Monster Publishing. And they want me to do an MCS-focused book. So it will be a youth-based book for K to 6, illustrated, but just to bring light to this.

Because if I’m out getting groceries and I’ve got my big gas mask on, and you see the young child asks right up, “Mommy, why is she wearing that big mask?” And the mom’s grabbing the kid away from me thinking I’m a freak.

And I go down on my knees to talk to the child and explain why I have to wear this, and the chemicals and stuff—if we can start educating kids when they’re young, we’re gonna get rid of a lot of these stereotypes and problems that just cause us so much grief. These products of easy convenience that are making us all sick—they’ve got to go away.

[00:22:01] Aaron Goodman: Jacqueline, you’ve been engaged in activism for quite a long time. You’re all champions. You’re all heroes. Are there any MCS mentors that you really look up to and have admired?

[00:22:13] Jacqueline Rice: To be honest, I know who the women are in this group, and I admire all of them. There’s a woman who does Fragrance-Free Coalition. I admire her in that she puts a lot of effort in.

To be honest, I don’t feel like there’s a central figure or figures that we can go to. There’s the Resilient MCS Conference. I would love to see a group of people come together and coordinate some of our ideas. And I know a lot of people—they’re worn out and et cetera, et cetera—and that’s why a group would be best rather than one person.

[00:22:48] Aaron Goodman: Yeah. Hey Marie, I wanted to ask you about your recent campaign. Do you want to talk a little bit about that? It’s been really great.

[00:22:55] Marie LeBlanc: Yes. Illuminate Canada Yellow was the hashtag that I used for the event. It was for Environmental Sensitivities and Multiple Chemical Sensitivity Awareness, which also includes electrical sensitivities as well.

[00:23:08] Aaron Goodman: So these were government buildings or public buildings, landmarks that were lit up in yellow, correct?

[00:23:15] Marie LeBlanc: Correct. Places like the Legislative Assembly in British Columbia. Alberta Legislative Assembly is coming up later on this month. City Halls, towers, bridges—it was amazing how many people came together and shared pictures of them wearing yellow in solidarity.

[00:23:34] Aaron Goodman: And this is the first year?

[00:23:36] Marie LeBlanc: Yeah, this is the first year.

[00:23:37] Aaron Goodman: I imagine there’s so much organizing that goes into creating a national event like that. How much of a role do you think social media plays in your activism, Marie?

[00:23:49] Marie LeBlanc: A lot. And I do have people that actually help post for me because I have a hard time—because I’m also electrically sensitive. So it actually helps me tremendously to have social media.

[00:24:01] Aaron Goodman: Well, on that note—Linda, you are really active with social media. Do you want to talk about the kind of incredible, imaginative, creative work you do?

[00:24:10] Linda Taper: Sure. I decided to engage more in activism because I couldn’t be by my mom’s side in her last days in the hospital and nursing home because of all these fragrance chemicals and such. And the realization of how massively outnumbered I was really kicked in at that moment. I was like, “Whoa. This is nuts.”

And ironically, for over 13 years, I worked at a vocational rehab facility. I was an advocate for people with all kinds of disabilities. And MCS never came up.

So it’s kind of an extra kick in the gut—for so long, being an advocate professionally to help people. And now here I am trying to get the most basic of needs met, and people won’t take me seriously. I get dismissed all the time.

So while I was looking up and researching, I came across all these amazing different memes and things that people had already been creating. I started printing them off and I would go hang them in bathrooms, put them on mirrors, on bathroom stall doors. I’d leave them in offices I would go to.

And then I decided to create and buy some bookmarks. So I went to the local library and I started sticking them in random books. And the librarian even let me put a stack up at the desk.

So then I said, “Let me make some postcards—make them bigger so people will notice them more.” Then I even had danger stickers made that I could put over those little automatic air freshener dispensers in public bathrooms. I could cover up the hole where the stuff was coming out, so I’d slap the danger stickers on there that had a little educational message.

[00:25:49] Aaron Goodman: That’s really great.

[00:25:50] Linda Taper: I would also take it and wrap it around the aerosol cans so they could no longer be sprayed. And I was doing all those things, but they got expensive. And I’m like, “Whoa. I can’t keep buying all this stuff,” especially without having an income.

So then I happened upon like Fragrance-Free Respect, a page that makes memes, and Fragrance-Free Revolution. Maria—the late Maria Rizzo—who made some amazing memes and stuff. I got inspired. I’m like, “Okay, I want to learn how to use Canva.”

So our local library had a beginner’s free class. But I couldn’t go in person because of all the fragrance chemical exposure. So I talked to them on the phone, and they agreed to teach it to me over Zoom. And that was the first time anyone actually ever made something accessible to me that I couldn’t get to in person. So that was amazing.

So I learned how to use Canva and I’m like, “Okay, I can do this too.”

[00:26:05] Linda Taper: And then I learned—a lot of the stuff I was seeing didn’t include essential oils and natural fragrance chemicals. And I can be around plants all day, every day—unless I just don’t like them or don’t want to be around them—and I don’t have any reactions.

You take sixty-three pounds of peppermint and turn it into a little five-milliliter bottle of essential oil—I react big time. Because it’s also releasing toxic VOCs.

So I decided to add that to my advocacy attempts also. To make it a more full scope of things that we can react to.

And then, of course, I like to include the smoke and different things too. But I just like to create the picture—be it with a meme or words—in the minds of those who likely don’t understand MCS. About how every scented product being used changes and invades the air that everyone has to breathe by adding those layers upon layers of chemical constituents.

And people don’t realize that they contain the neurotoxins, carcinogens, respiratory, eye, skin irritants, endocrine disruptors, et cetera. And they’re not actually cleaning or freshening anything, because the marketing ads have convinced them they are. But they’re just simply polluting all the air and all the surfaces and their bodies and everything.

I would like to say that I’ve been wildly successful in reaching and inspiring many of them to actually enact changes—but that hasn’t happened yet. But I still keep hoping.

[00:28:22] Aaron Goodman: Yeah. I mean, I’ve just been touched by so much of what you’ve shared.

[00:28:26] Shelley Petit: Never say that it hasn’t inspired someone yet, because you don’t know. If one person changed their ways at home—and that’s not changing the whole world—but every little victory is always still a victory in advocacy. And we need to count the little victories.

[00:28:43] Aaron Goodman: That’s true. Very true.

Yeah. And Linda, in one of your recent memes—I’m looking at it now, and I invite people who are listening to find you on social media, “Linda is in the House,” and I’ll share links to your work and to everyone who’s on this panel—but I’m looking at one of your memes that has a yellow big-billed canary in a circle with green leaves and some musical notes, and your words are: “Listen to the human canaries.”

And you mentioned that some people aren’t listening to you. How do you meet that when people dismiss you?

[00:29:18] Linda Taper: It’s challenging. It depends on the situation, really.

Mainly I just try to share my direct experiences and the facts that I’m aware of—either by lived experience or by research.

And if it’s clear they have no obvious interest in learning, then I need to separate myself.

Most of the time, I just continue trying to educate and trying to share the education that I’ve been fortunate enough to find myself.

Unfortunately, I do have some experiences that—like most recently—I had a horrific visit with the local gynecologist, in which she and her receptionist were so incredibly unprofessional. I had no choice but to file a formal complaint with the Department of Health. That was a learning experience in itself.

[00:30:06] Aaron Goodman: Was it related to fragrance or chemical exposure?

[00:30:09] Linda Taper: Oh yeah. It was—well, I first—I called ahead and asked. I always say, “I’m checking on the fragrance forecast,” to see what type of fragrance products are used in your space, because I suffer severe adverse reactions.

And the receptionist laughed.

I was like, “I don’t appreciate you laughing. This is a medical issue.”

“Oh, I’m not laughing at you. That’s just how I respond.”

Well, this lady was the only one I was able to get in to see anytime soon, so I went ahead and set up the appointment.

And then once I arrived in person, she had told me that she checked with the doctor and they had never heard of such a thing. But there was no way they could accommodate me. “You just need to understand that.”

I said, “Well, I understand that, but I need to have this test done, so I’ll be in.”

So since she’d said they’d never heard of it, I decided to take the Fragrance-Free Coalition poster and some examples of fragrance-free policies and whatnot.

And when I did that, she started laughing again when I handed them to her.

So I thought, “Okay, if I can just get past the receptionist and get back to the doctor, everything will be okay.”

The doctor was no better.

She said that I wasn’t about to teach her anything, because she already knew all about it. And she had 6,000 patients, and apparently I was the only one who ever had a beef with it—because no one else had ever said anything. And her losing me as a patient wouldn’t hurt her practice whatsoever. That I could just “go on down the road.”

[00:31:39] Aaron Goodman: Yeah. So speaking up—do you see that as a form of advocacy?

[00:31:43] Linda Taper: I do.

[00:31:44] Aaron Goodman: Yeah.

[00:31:45] Linda Taper: I think if those of us who suffer and deal with it firsthand don’t speak up, it lessens our chances of ever actually being heard or taken seriously.

[00:31:58] Jacqueline Rice: Yeah. The whole medical and dental facility thing—not being fragrance-free in the States—is an abomination.

[00:32:05] Aaron Goodman: Hey Marie—in your art, you often draw on your lived experiences. Do you want to talk a little bit about what it takes to do that? To put yourself out there? And if you’re met with any resistance or disbelief?

[00:32:18] Marie LeBlanc: Yeah. I’ve pretty much used my lived experience for most of my art shows. And I also use other people’s lived experience.

Like “Overdressed”—I wore a dress in the desert based on Maslow’s Hierarchy of Needs, where I wear a mask for his air, food, water—all these different things that we need. I did the art show and a lot of people came to the art show. But there are a lot of people who just wonder: Why did I do it? And why am I putting myself out there?

And really, at this point, what do I have to lose? I have everything to gain at this point—because I’ve lost everything I own throughout the whole process.

It makes it really, really hard—because it’s not just my story. Yeah, my story’s a story of others, but there’s so many other people out there.

People just don’t believe me. They say I look fine—I look perfectly fine—because I’m walking or I’m laughing.

So it’s really hard. And even if I’m at a gas station—which has nothing to do with my art—but I cannot pump my gas. So I’ll ask someone, “Could you pump my gas?” And I’ll get some negative feedback. And some other people have no clue.

So I actually have a little thing that’s business card–sized that has my MCS and EI Awareness Acknowledgement short film on it, and my website on the back. Then the next year when I come back to the same place, they go, “I remember you. I saw that. I have a friend—or my mom...”

[00:33:34] Aaron Goodman: Yeah. Well, that’s great. Maybe we can have a brief round of any tips you may have for folks who, you know, may want to lean into activism?

[00:33:43] Shelley Petit: Find your like-minded people—your friends that you can work with—because it’s hard to be a big activist by yourself. And don’t get mad at people when they don’t understand.

I just remind people: It’s a recognized disability—eventually federally in Canada too, in the States—it does have recognition. There’s the invisible disability group that I have a neck tag from, that I wear when I go out in case anything happens.

Don’t forget—50 years ago MS was not recognized, and treated just like this. So just because you don’t understand it today—trust me, somebody in your family, someone you love, is affected today or will be tomorrow.

So let’s make things better now. And it’s just educating as much as you can.

[00:34:29] Aaron Goodman: Thank you so much. Anyone else—if you’d like to share?

[00:34:32] Marie LeBlanc: This is Marie. I think especially leading by example.

If I’m saying that I can’t handle fragrance products, I’m not going to wear fragrance products. And people can see that. And I will actually go to someone—I’ll say to them, “They’re using all these scented things. What if they bought one new thing, just scent-free? One thing. Start with one thing.”

And I say to some people that maybe they might just feel a little bit better. Their brain fog or their headaches might go away. And if maybe they use a different laundry detergent—maybe their eczema will go away. And actually, some people—it does go away. And they do feel better.

[00:35:10] Aaron Goodman: You know Shelley, I’d be remiss if I didn’t ask you—and if it’s too personal, just—we don’t have to go there. But you mentioned you’re fighting cancer. And in our own conversations—because we’ve known each other for some time, and you’ve been on the podcast before, you were one of the first guests—you mentioned that perhaps you may have not noticed the symptoms of cancer, or you mistook them for MCS symptoms when it was cancer.

If you’re open to talking about that, I welcome it. You don’t have to.

[00:35:44] Shelley Petit: Absolutely. I think that we often are afraid to talk to our doctors because we’ve been so gaslit by so many of them.

We see any new symptoms that come out often as, “Well, that’s just comorbid to MCS.”

And so the pain that I was having in my joints—I just blamed that on MCS.

And what if I had taken it up—maybe thought about it a little bit more—or wasn’t suffering from MCS? Would I have been diagnosed earlier? Before stage four? Before I’m at the point that we’re talking extending survival—not having clean light from here on in?

And could I have avoided some of that?

And part of it, I think, is looking and saying—yes, I have MCS. But if something else is feeling off, don’t just blame it on the MCS and have it checked.

Because we only have one life. If I can get people to think and check for these cancers as well—because I did not have anything on my skin, and it’s a skin cancer, but it’s metastatic, which means it’s now traveling through my whole body.

And if I can get just one person to get that diagnosis earlier—if I can help just one person—I’ve served my purpose in life. I see that with MCS as well. If I can help one person get through this, I’ve served my ultimate purpose in life. And that’s what I want to do, for what time I have left on this earth.

[00:37:13] Aaron Goodman: Oh, thank you so much for sharing. And my heart is with you. And we all support you so much.

[00:37:18] Jacqueline Rice: If I could ask people out there who do not at this point have any issues with chemical sensitivities or fragrance—if they could speak up on behalf of those of us who do.

If they notice an overabundance when they go out—if they are at a—I go to theater a lot, and I couldn’t stay at one because a man was so cologned up. If they could say maybe to the management, “You know, maybe create awareness. Put up a sign.” Something like that.

Because that means a lot. And so we can all keep doing it, but if the people out there who are not at this point affected can also advocate on our behalf—hallelujah.

[00:37:56] Aaron Goodman: Yeah. We need allies.

You’ve been listening to the Chemical Sensitivity Podcast. I’m the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community.

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman, made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity.

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