[00:00:00] Aaron Goodman: Hi, this is Aaron, and I'm gonna do something different this time to open the episode.

You can probably tell from my voice — I'm having a reaction. It’s no big deal. I have them all the time.

What was it? It's always a matter of trying to figure it out, but I'm pretty sure someone was wearing fragrance. Perfume. Sweet smell filled up the community center where I practice judo with my kids a few times a week.

I'm taking the dog for a walk. I'm walking very slowly.

It's the end of May. It's really hot — hottest day of the late spring, early summer, if we can call it that so far — and I'm having trouble putting words together.

I had a hard time sleeping. I was up most of the night. It’s parent appreciation day at school, and when my kids asked me, I couldn't even imagine going because I could hardly get out of bed. And my mind is completely blank. It actually feels swollen.

I've read that’s what happens — that this is partly a brain inflammation illness.

I probably look relatively normal. And that’s the thing about an invisible, or mostly invisible, illness like this.

I remember when I was still living in my parents’ home as a child, my older sibling regularly used to call me “spaced out” and berate me for that.

What was I reacting to? Probably my parents’ cigarette smoke, or the cleaning chemicals they used. Something in the food, or the laundry detergent my parents used. I don't know.

Sometimes the reactions last 24 hours. It'll fade.

I don't feel sorry for myself. You know what it's like — to have to get up and take care of kids, and a house (if we have one, if we're lucky to have one), a job (if we can have a job) — go through life looking like relatively normal, but feeling inside like we’re really not.

The thing about this illness that some people don't understand is that it makes life completely unpredictable.

I sometimes tell myself, “Oh, I'm having such a great week.” Last week was such a challenge. I reacted every other day. “Oh, I haven't had a reaction for a string of days.” Just because I hadn’t run into any scented laundry products.

But I'm completely floored today.

I have a friend who's been asking me to join him to run laps at a track. And I've had to cancel. I think last week I had to cancel every day. And he's starting to stop calling me.

It's okay, 'cause he's pretty busy these days, and I think he gets it. But after a while, it's hard to keep friendships when you're canceling all the time.

I try not to blame it on anyone.

My wife works — she's a college instructor — and if she's out for the day at work, she comes home and she carries the scent of wherever she's been. The bus, the classroom. You know how it goes.

I try not to blame her. Sometimes I ask, “Did you wash your hair?” She's sick of me asking. “Did you wash it really well?” I hate to have to ask these kinds of questions. She doesn't like it either.

Fortunately, my kids don’t have to come home and run into the shower or bath like they did the last few years. Maybe their teachers aren't using air fresheners, or maybe they changed the cleaning products.

It gives me a little bit of grace.

I have a presentation today at work. It's in a few hours. So hopefully my brain fog will lift, and I'll be able to string my thoughts together and sound a bit more coherent.

There’s very little recognition about invisible illness and MCS. It’s not a complaint. I just wanted to talk frankly and openly with you today — something a little different.

And if you ever want to record a message about anything related to MCS — your lived experience — please don't hesitate. Record something on your phone or any device and send it. You can email aaron@chemicalsensitivitypodcast.org. That’s aaron@chemicalsensitivitypodcast.org.

Send in a message. We can’t do this alone, but we can do it together.

Thank you so much for all your feedback, for listening, and we'll talk soon.

[00:02:52] Aaron Goodman: You are listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker, and researcher, and I'm also someone who's lived with Multiple Chemical Sensitivity, or MCS, for years.

MCS—also called chemical intolerance, Toxicant-Induced Loss of Tolerance, or TILT, and idiopathic environmental illness—affects millions around the world.

It's a condition that makes everyday life extremely challenging and unpredictable. Fragrance, air fresheners, fresh paint, scented laundry products on someone’s clothing, and a lot more can trigger exhaustion, brain fog, muscle pain, rashes, and a wide range of symptoms.

And yet, for all its impacts, MCS remains largely invisible. Doctors dismiss it. Employers rarely accommodate it. Even friends and family struggle to understand.

This podcast aims to change that. We dive into the latest research, share real stories, and explore how people navigate life with an illness many refuse to see.

In this episode, I’m speaking with Norwegian sociology researcher Pia Aimée Tordly. Her research on environmental disability is informed by her experiences living with MCS.

When Pia first developed the illness in 2010, she lost her job, had to move ten times, and had no other option but to live in her vehicle.

Since then, Pia has completed two master's degrees focused on environmental disability and MCS.

Pia, thank you so much for joining me. Do you want to take us back to where you were and what you were doing when you first thought, “Hey, I think I’m probably dealing with MCS”? What was happening in your life at that time?

[00:06:45] Pia Aimée Tordly: I was moving into an old apartment. In that new apartment, I started to get some breathing difficulties. It was like breathing in sand or something. I had never felt anything like it before, so I just thought, okay, I'm tired, I’ll go to sleep. But the next morning, I was even worse, and I didn't understand.

I had this strange thought—I want to ignore the symptoms because I want to live here. And when I went out of the apartment, after half an hour, the symptoms were gone. Every time I went into the apartment, the symptoms started up again and it got worse and worse.

And on the fourth night I was supposed to spend there, I just couldn't breathe at all. In the middle of the night, I woke up, got out of the apartment, and we found mold—lots of it.

I got an appointment with a lung doctor. And after testing me, everything was fine—nothing showed up on the tests—and he said, “You have MCS.” He just said, “I'm the only one in Norway who believes that diagnosis exists. That’s what's bothering you. Read about it. Learn to cope.”

[00:08:12] Aaron Goodman: Yeah. So you had breathing challenges. Did you have other health issues related to MCS at that time and going forward?

[00:08:20] Pia Aimée Tordly: After that, I moved from place to place. I couldn’t be indoors anywhere. So I found this place I could stay in. It was totally free from anything—any chemicals—and that’s where I began to tolerate indoor climate.

But at this time, I couldn’t tolerate any fragrance. I’d get all the symptoms: the brain fog came, and burning feeling inside, headaches, nausea, memory loss, and all those—mm-hmm—cognitive impairments, you could call it.

[00:09:00] Aaron Goodman: Mm-hmm. Yes. And those continue today—to this day—as you, when you—

[00:09:03] Pia Aimée Tordly: Yes.

[00:09:04] Aaron Goodman: —go into indoor environments?

[00:09:05] Pia Aimée Tordly: Yeah.

[00:09:06] Aaron Goodman: And are exposed to fragrance and mold?

[00:09:09] Pia Aimée Tordly: The first time I got my MCS was in 2008, and a week ago, I bought a new TV—television set. And that’s why I have a headache today also, because something in the TV fills the air inside. And there's no smell. It’s not perfume. I just understand—it’s the TV.

It’s getting better now, because the TV is away. It’s not just body products and cleaning products—it’s all kinds of things.

[00:09:40] Aaron Goodman: How did other doctors respond to you, when you went and—maybe, I don’t know if you shared the diagnosis or if you asked for support—how were you treated?

[00:09:51] Pia Aimée Tordly: I had to get a new primary doctor. In Norway, all the citizens have their own primary doctor—it’s a steady doctor, you use the same doctor who follows you. I felt I had to get a new doctor because I got sick every time I went there—because of all the perfume.

For a long time, I was looking for the right doctor who believed me, and who I could tolerate being in the office with. I tried to get help and explain, but I don’t think they understood what I was talking about at all.

So when I finally got my doctor—who I have to this day—he had heard about it. He’s taken me seriously.

They don’t call it MCS in Norway. They call it “symptoms associated to environmental factors.” They don’t believe that chemicals are the cause of the illness—of the symptoms.

[00:10:52] Aaron Goodman: I want to talk more about your decision—when you had MCS, knowing you had MCS—and then you decided to embark on this really challenging path of studies, of going back to school to change your career, to change your life, and to use your illness as a focus, as a guiding point—a launching pad perhaps—for your studies, to deeply explore MCS.

I imagine that took a lot of courage—to change your life. What was it like going back to school, and did you have to face physical challenges of being in indoor spaces? Did you have any challenges, or feel any feelings about sharing it?

[00:11:40] Pia Aimée Tordly: I felt like I had to share it from the start, because I was looking for answers. Has anybody experienced the reality as I do? Or am I just an alien?

So I was open about it from the start. When I fell out of work, it was a process. It took maybe five years to find out what was wrong with me. I did all these tests. I also went to a psychiatrist for one year, to rule out mental illness. That was a good thing, because I had that written: it must be physical.

So then I got welfare payment. I was very ill at that point. I had to isolate myself from other people for at least a year. And then I felt I had to investigate this issue—this illness—on my own, because nobody else did it in Norway. And that’s when I decided to go back to school. And higher education is free of charge in Norway.

[00:12:49] Aaron Goodman: And I’m struck, Pia, hearing you say no one else was investigating it. So there’s very little research, very little awareness—you found one doctor, but the other doctors were uninformed, ill-informed—and so you decided to say, “Hey, I’m going to take up this challenge.”

Was there one particular question you may have been looking into in your research? What was the guiding question you had?

[00:13:17] Pia Aimée Tordly: When I started, I didn’t actually have a question, because I just wanted people to know about it. That was the motivation. And I also tried to look for a language—how to talk about the issue. Because you can’t compare it to other chronic illnesses.

[00:13:41] Aaron Goodman: In your research, you talk about the language that healthcare providers and physicians use, and you write that, quote, “It mystifies, psychs, and stigmatizes a group of people.”

Did you feel stigmatized?

[00:14:00] Pia Aimée Tordly: Yeah. I felt invisible. I felt like I was living in a different reality. MCS—it’s invisible in the system.

[00:14:14] Aaron Goodman: You mentioned, when you got a partial diagnosis, a doctor told you, “Pia, you have MCS,” and then you were sent to a psychiatrist.

We’re often told it’s a psychological disorder—but you actually had that experience.

Let me quote from your thesis: “When biomedicine falls short, psychology is often brought in.” Do you want to talk a little bit about what that experience was like for you—sitting with a psychiatrist who was analyzing you? What was it like having to go through that process?

[00:14:45] Pia Aimée Tordly: So I went to this psychiatrist. We talked, and she was looking for what was wrong with me—do I have all these fears? But she didn’t find anything like that.

And I responded to the cognitive therapy very well. I learned to cope with things, but the symptoms were the same. I didn’t have any psychological impairments.

That was the empowering aspect of it.

[00:15:16] Aaron Goodman: Yeah. And the argument is that people with MCS, environmental disability, chemical intolerance—have experienced childhood trauma, and we have post-traumatic stress disorder, and we’re traumatized and we have psychological disorders.

So when you hear this psychogenic argument, what are your thoughts and feelings about it?

[00:15:39] Pia Aimée Tordly: In the beginning, I was very angry and sad and scared, because I felt that the doctors didn’t believe me.

Now, it doesn’t bother me. The thing that bothers me is solutions for the problem.

If it’s just psychological, you just go to therapy and the rest of society goes free. If it’s about the chemicals, we need to downsize the dis-enabling barriers—the chemicals. So it’s two different solutions.

Okay, we can do both. But you can’t leave out the chemical, the environmental aspect of it.

[00:16:23] Aaron Goodman: I want to ask you—when I think of Norway, I’ve been to Scandinavia, but I haven’t been to Norway yet—I think of a clean country. I think of snow-capped mountains and clean oceans, clean air. Obviously, it’s not all of that. And mold is a significant issue in that part of the world.

Do you think there’s a stereotype that might contribute to the dismissal of people with MCS? Like, how can you be reacting to chemicals in such a pristine, clean country? “This is Norway. It’s advanced, it’s a wealthy country—how can you have this illness here?” Is there anything to that?

[00:17:03] Pia Aimée Tordly: Okay. We have our mountains and free spaces. It’s not so crowded. And we are a country that is strongly regulated when it comes to chemicals.

Maybe it’s something in that, because the things that are legal in Norway are taken for safe. We are on top in the world when it comes to trust. We trust the government. We have so high trust in the government. So we don’t believe that they do anything to harm us.

So when someone claims that, “Oh, the government—they do things that harm us”—it’s hard to believe.

[00:17:45] Aaron Goodman: Do you think officials are open to listening to people like you in Norway—and other patient advocates?

[00:17:53] Pia Aimée Tordly: Yes and no.

I try to reach out to politicians. And when you reach out to some, they say they understand. They show compassion. They are friendly.

But when it comes to action, there are other things that seem more important.

[00:18:12] Aaron Goodman: When it comes to action, what kind of—are there some specific things that you think could be done to make it easier or safer for folks with MCS in Norway and beyond?

[00:18:26] Pia Aimée Tordly: I think we have to start with our education system—and start at the bottom. And also, we have to start at the top.

We have to have some regulation and political will. They have to want to alter the curriculums in training of social workers and healthcare workers.

[00:18:48] Aaron Goodman: You write in your work about the role of social workers. Do you think social workers could play a role in changing the medical system so it’s better for folks with MCS? What would that look like?

[00:19:02] Pia Aimée Tordly: Yeah. They have to be trained, of course, themselves first. But they can play a role. They can guide people around them about this.

Doctors and nurses and healthcare personnel also should have the same training. But social workers can bring people with the same condition together, make free spaces, and help with housing maybe.

I think that’s an invisible problem in Norway. As you say, we are a wealthy country. If you can’t find a place to live—then that’s a stigma in and of itself, you know? If you are homeless.

Yeah. So I think that’s one role that social workers can fill—helping with housing. And I don’t think it’s a lot of people in Norway that need that kind of help. But for those who do, it’s terrifying.

[00:19:56] Aaron Goodman: Pia, is there anything you’d like to share with folks who are listening in other parts of the world?

[00:20:03] Pia Aimée Tordly: I want to say that some doctors in Norway—probably many—are good doctors who believe in this and who are helping the patients as good as they can. So there are a lot of good doctors.

So I think when it comes to—what do you call it? 

[00:20:23] Aaron Goodman: —family doctors?

[00:20:25] Pia Aimée Tordly: Yeah. When you go there for MCS diagnosis or help, recommendation, or something—some doctors are very good. They want to help you. Some doctors maybe think, “Oh, it’s psychological.”

Another thing is if you come to a hospital, for example, for other issues—removing appendix, for example, which I did this winter—no one has heard about MCS. I have written so many letters to the hospitals and asked for accommodation there, but they are just not interested.

[00:21:02] Aaron Goodman: Yeah. And we’re fortunate when we find healthcare workers, physicians, who see the body as a whole—and systems that treat us as whole.

So Pia, thank you so much for taking time to talk with me. It’s been really fascinating. It’s been such a pleasure.

[00:21:16] Pia Aimée Tordly: Yeah. Thank you for having me.

[00:21:19] Aaron Goodman: 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. The podcast is generously supported by the Marilyn Brachman Hoffman Foundation and listeners like you.

If you wish to support the podcast, please visit: chemicalsensitivitypodcast.org. Your support helps us continue making the podcast available and creating greater awareness about MCS.

To learn more about the Chemical Sensitivity Podcast, follow the podcast on Facebook, YouTube, Instagram, Bluesky, and TikTok.

And as always, you can reach me at: aaron@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 Brachman 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.