Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher, and I've lived with Multiple Chemical Sensitivity, or MCS, for years. MCS is also known as chemical intolerance, Toxicant-Induced Loss of Tolerance, or TILT, and idiopathic environmental illness.

The illness affects millions around the world, and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more.

Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodations can be really complicated. Dismissed by healthcare providers, employers, even loved ones, many feel misunderstood, isolated, and invisible.

This podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes.

In this episode, I'm speaking with Isabella Clark, who's completing her PhD in sociology at the University of Oregon in the U.S. Isabella's research involves conducting in-depth interviews with people with MCS to find out how the illness impacts their lives. You'll hear Isabella talk about the physical and emotional labor that people with MCS have to do.

As we know, it's work fortifying our homes and living spaces so they're safe and free from chemicals. It's labor asking people in our lives not to use certain products that make us ill. And it's labor explaining ourselves and our illness to colleagues, friends, partners, children, healthcare workers, human resources professionals, and others. It was really a delight to speak with Isabella, and I'm so glad to be able to share the conversation with you.

Aaron Goodman: Well, hi, Isabella. Thanks so much for being here.

[00:02:51] Isabella: Thank you so much for having me.

[00:02:54] Aaron Goodman: Yeah, I've been really looking forward to this. Would you like to talk a little bit about why MCS interests you? You know, why would you embark on a PhD focused on Multiple Chemical Sensitivity of all the topics available?

[00:03:11] Isabella: Sure. Absolutely. Well, I am an environmental sociologist. And so when I was doing my comprehensive exams, I was doing those exams on chemical pollution and chemical exposures, and also reproduction. And so I knew I was looking for a project that had to do with chemicals. At the time, I was thinking it was going to have to do with reproductive health and chemicals.

And I read Stacey Alaimo's book, "Bodily Natures," and I came across this chapter that's about MCS, and I just couldn't believe that I'd never heard of this, especially because chemical pollution is such a legacy issue within environmental sociology. And then the second part to that is that my mom has really bad fragrance sensitivities. So there were these echoes of her experiences and the experiences that I was reading about.

[00:03:57] Aaron Goodman: Was it something that your mother had while you were growing up? How did it impact your relationship, and what did you think?

[00:04:05] Isabella: Yes, it was just pretty normal. Like we just didn't buy scented products for my mom. She has a headache condition, and so she's pretty much always having a headache. She's in chronic pain with her head, and fragrance is a big trigger for her, but I think it's not the only thing that brings it on. So in terms of our relationship, it's been pretty easy because I don't really like fragrance either. So I just never wore perfume or did things like that. But I know it's been an issue for her in the workplace before. And since I've done this project, we talk about that more than we did before.

[00:04:41] Aaron Goodman: Perhaps you want to share how many years you're into this PhD project, and what is the value, do you think?

[00:04:49] Isabella: Well, I'm three years into the project at this point, and I am graduating in May. And then I do hope to turn my dissertation into a book. So hopefully that will be disseminated to a wider audience. I think that the value is that there's multiple things happening. There's a strong thread of invisibility that runs through the themes of this illness. The illness itself is invisible, but then it's also the way that our bodies as a part of nature are also invisible and how people can sort of be made invisible by the state or institutions refusing to deal with them or give them the support that they need.

And then very obviously, the invisibility of chemicals in our interactions with one another, the invisibility of the responsibilities that we might have towards each other's health. I don't know that my project is going to change things significantly, but it really brought to the fore this idea, like, oh, we might actually have responsibilities for other people's health in a way that's embedded in our daily lives. There's chemicals in our interactions, in our public spaces, that we're not really doing things about, that we're leaving people to manage on their own, but for people with MCS, they can't manage it on their own.

[00:06:02] Aaron Goodman: You know, I see your work as taking two directions. The first is about the labor that we folks with MCS have to do—the work we have to do, physical and emotional, maybe psychological, I'm not sure, to protect ourselves, to stay safe. And the second part of your work, you know, you talk about the social isolation, the impacts that folks experience because of MCS in the world. So why don't we take a look at the labor? Do you want to talk a little bit about what you mean by the labor that people have to do?

[00:06:37] Isabella: So a lot of times when we talk about labor within sociology, there's, like, you can look at domestic labor, you can look at paid labor, you can look at what's called illness labor. And for MCS, I really think it's this chemical avoidance that is the labor. Labor is figuring out ways to avoid chemicals in the world, in relationships, and in your own space. It's like this invisible work, and it takes a huge toll on people's lives.

Like, it takes a toll on them mentally because it's way more mental effort to be thinking about this stuff all the time. It takes a toll emotionally, especially when you're trying to recruit other people in your life into these behaviors or into even just believing that your experience of the world is a real one.

And it takes just a lot of physical labor, a lot of time, a lot of energy, a lot of trying out products that you think are going to be safe and then having them actually cause a reaction. Then there's a waste of money, a waste of your day, and you're left feeling awful afterward. One of my respondents—many of the people I talked to had professional careers, had done a lot of interesting work, or had master's degrees or PhDs. They had been intellectually and professionally participating in the world.

And one woman was telling me about how frustrating and banal it is for her to have to wash her clothes every morning in the sink because she can find so few pieces of clothing she can tolerate. That's just one tiny example of something that a person who doesn't have chemical sensitivity fully takes for granted. It's such a removal of all your choices.

And it's something that gets displaced onto the individual because we aren't creating structures where all clothes would be safe—because cotton wouldn’t be treated with pesticides, it wouldn’t have toxic dyes, and people wouldn’t have to react to their uniforms at work. But instead, all that work isn’t being done at an institutional level, so it falls to the individual.

[00:08:46] Aaron Goodman: Oh, yes, and I’m just nodding away here listening to you. It’s so validating, and, you know, I find it quite emotional, actually, because I’ve never heard it put in this kind of language—that this is labor. So many examples come to mind in my own life. I’m a university educator, but I can’t be in the classroom anymore—it’s been a number of years because of the fragrances. I used to really enjoy teaching and engaging with students, and that has been really limited. I teach all online, so there is engagement, but it’s much, much different.

And in terms of the work, like, I want to do some painting in our home, and things like that—home renovations are never easy. And in my relationship with my wife, you know, there’s been so much work that’s gone into the number of discussions around the products we’re going to use as a family. There’s a lot of work. And, you know, one person you wrote about, you interviewed, his name is Miles, he said to you that, quote, “Coping with Multiple Chemical Sensitivity is like an unpaid full-time job.”

[00:09:56] Isabella: Yeah, and it’s like this job that’s not recognized, certainly by the state, as being work. So I talked to so many people who are living off Social Security Disability, which is a very small amount of money. It acts as if anyone who’s disabled isn’t having to do work in their lives, and like that work doesn’t deserve some sort of compensation. It’s not recognized by our economic system as having value to our economy, which it absolutely does. It has value that goes beyond just the economic—it’s emotional and relational and even spiritual.

[00:10:31] Aaron Goodman: And part of the labor is making our homes safe and free from chemical contamination. And, you know, we know that homes that are safe from chemicals tend to be more expensive than homes that have chemicals. So there’s a lot of labor making homes work for us, right? It takes a lot of creativity, energy, and money.

[00:10:55] Isabella: Yes.

[00:10:57] Aaron Goodman: When you think back to the interviews you did with folks, any examples come to mind of people doing creative things to keep their homes safe?

[00:11:07] Isabella: One thing I noticed—one woman, her and her husband, I did an interview with both of them, and they invited me inside their home. I thought she had a really nice house. I thought it was very comforting and cozy, and she had art on the walls. It was a space I felt very comfortable in. And she was talking to me about how this is not her standard of what her home would look like if it could look however she wanted it to. Everything she’s found has had to be like metal or certain kinds of wood. I was very impressed with how nice she still made her home feel despite the limitations imposed on her.

But I think for her, emotionally—well, a word she used in her interview a lot was “demeaning.” I think it probably feels demeaning in a sense to be so limited and to not be able to shape your home to be the way you want it to be. That just feels like a freedom other people really get to take for granted.

I also try not to go on about the aluminum foil stuff too much in my work, because there are these little things you can pick out of this illness experience that can feel very exoticizing. That adds to the stigma of the experience because there’s so much cultural meaning around the symbol of aluminum foil and “tin hats” and what that means—which is that someone must be psychologically unwell or dealing with delusions. I don’t think that’s true in the case of MCS, and I don’t think that’s the impetus for people to put aluminum foil on their walls.

[00:12:45] Aaron Goodman: One question that I have in listening to you, Isabella, is the number of interviews you did. Can you share the ages, genders, locations, and how many interviews were done in person versus online?

[00:13:00] Isabella: Sure. So I did two field trips to the Southwest. I spent a month in a rural area that I called Juniper in my work, and then I went for about a week to a city that I think I called Desert City. There, I was able to talk to people in person. I’d say about half of my interviewees—15 to 18—were in person, and I had a total of 33 interviews.

The people I met put me in touch with others—friends or acquaintances—who I interviewed over Zoom. I also attended a couple of online support groups to see what support looks like for people with MCS and what people with MCS talk about with each other. From there, a lot of people in the support groups said, “Oh, you can talk to me.”

About two-thirds of my interviews were with women, and a third were with men. I spoke to 19 women with MCS, 10 men with MCS, and four people who were friends, family, or spouses of someone with MCS. I really wanted to do more of those family and friend interviews, but it was hard to find those people. I wanted to know, “How do these chemicals get into your social interactions? What kind of work does this illness experience create for friends or family members? Does this change the way they think about chemicals in the world?”

I think the people I talked to skewed older. I’m not sure why that is. It might have to do with where I went or how I recruited participants. There are certainly people in their 30s with this condition, but they may not be as connected to the Southwest or support groups.

[00:14:47] Aaron Goodman: Yeah, a couple of things come to mind. I don’t know the exact percentages, but I think more older people have the illness, and a lot of younger people just don’t know. Many people don’t know what they have, right? You mentioned your mom has headaches—people often don’t connect the dots. And when you say Southwest of the U.S., what states are we talking about?

[00:15:05] Isabella: Arizona and New Mexico.

[00:15:08] Aaron Goodman: Let’s go back—I want to talk more about housing. You write about people with MCS who become homeless, who lose their homes because they can’t make them safe for different reasons, and the devastating impacts. Do you want to talk a little bit about some of the folks you met in this predicament?

[00:15:27] Isabella: Sure. One woman I spoke to considers herself an environmental refugee. She’s always on the run in her van and has dual citizenship between Canada and the U.S. She moves between countries to follow the seasons and to access government assistance.

When we talk about homelessness, we often focus on veterans, people with mental illness, or LGBTQ kids who can’t live with their parents. But people with chemical sensitivities are at high risk—both because of the chemicals themselves and the lack of social support.

[00:16:13] Aaron Goodman: Do you think there’s government neglect? Could governments in the U.S. or elsewhere do more for housing people with MCS?

[00:16:25] Isabella: Absolutely. The U.S. government isn’t doing enough to address housing, period. The housing market isn’t set up for working or middle-class people to own homes. And then you combine that with inadequate chemical regulations. Scientists know there are unknown health risks with many chemicals being developed and used, yet even when tiny parts of the problem are addressed, they’re highly politicized because the environment is such a polarizing issue.

[00:17:18] Aaron Goodman: Because it’s so politicized, have you faced scrutiny as a researcher? You mentioned your mom’s experience earlier—did that give you confidence to pursue this work despite skepticism?

[00:17:51] Isabella: Yes, absolutely. Thank you for bringing that up. One thing I point out to skeptics is that even if they don’t think this illness is real, there’s plenty of scientific evidence about the impacts of fragrance on asthma, headaches, and even people with autism, who often have heightened sensory experiences.

It’s strange to me that people immediately dismiss this, even though we know chemicals are bad for us. Humanity is basically running an experiment on the planet with biotoxins. I don’t understand why people don’t hold space for the possibility that MCS is a result of that.

[00:18:55] Aaron Goodman: What did people with MCS share about their experiences with denialism?

[00:19:04] Isabella: Many people told me the denialism is the worst part of their experience. It comes not just from institutions—like doctors dismissing them or governments giving minimal disability support—but also from friends who won’t change their laundry detergent. That kind of refusal feels like a betrayal. People are so invested in chemical norms that they can’t see what their friend is going through or how small changes could help.

[00:19:56] Aaron Goodman: Let’s talk about the emotional management piece. You write, “There are many interactional dimensions of living with chemical reactivity that necessitate emotion management.” This includes withstanding scrutiny, having embodied experiences dismissed as psychological, and explaining that personal choices impact others’ well-being. Do you view this as emotional labor?

[00:20:35] Isabella: Absolutely. It’s emotional labor to be effectively kicked out of mainstream society, then have to regulate yourself emotionally so you don’t come off as “crazy.” It’s exhausting to manage the emotional toll of being dismissed while trying to stay composed enough to be seen and believed.

[00:21:10] Aaron Goodman: That’s incredible, Isabella. Is there anything that surprised you or left a lasting impression during this work?

[00:21:26] Isabella: It was surreal to see this whole other world and how people find ways to keep going, even under extraordinary circumstances.

[00:21:42] Aaron Goodman: You’ve been listening to the Chemical Sensitivity Podcast. I’m host and creator Aaron Goodman. This podcast is supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support us, visit chemicalsensitivitypodcast.org. Thanks for listening!

The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and 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.

The content, opinions, findings, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.