[00:00:00] Aaron Goodman: You are listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman, a journalist, documentary maker, and researcher, but 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, 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 that many refuse to see. This episode is part of our efforts to amplify the voices of people with MCS.

I'm speaking with Kathleen Wallace in New York State in the U.S. Kathleen has lived with MCS and Lyme disease for years. Kathleen was a successful manager for a national company. When she got ill, she lost her job, her home, and her relationship. She now offers all-natural hair services for people with MCS in her home.

And Kathleen is also an outspoken advocate, helping to raise awareness about Lyme disease and MCS. Kathleen, thank you very much for joining me on the podcast.

[00:01:51] Kathleen W.: Thank you for inviting me. It's my honor to be here with you today.

[00:01:55] Aaron Goodman: So, if I think back to it, we originally met on social media—I think Facebook—and I think you reached out to me and you talked about your experience and knowledge around Lyme and MCS. Why was it you felt like you wanted to reach out?

[00:02:12] Kathleen W.: I decided to reach out to you because I have been advocating now for Lyme disease for 15 years, and I have found that if I have gotten to a federal level, very few folks understand the syndrome of multiple chemical sensitivities. So I've decided to hone my advocacy right into that syndrome.

There's two different things I'm trying to do. Number one, I wanna educate people. I wanna educate the public. And the second thing I'm really looking to do is to fight for air quality in public places for those who suffer with multiple chemical sensitivities. And I've been impressed with all the work and the podcast that I've watched of yours.

[00:02:56] Aaron Goodman: Oh, you're very kind. Thank you so much. Do you wanna talk a little bit about what showed up first for you?

[00:03:03] Kathleen W.: Let me give you a little background on myself. I am a hairstylist. I have been in this industry—we'll just say more than 40 years. I don't have to discuss my age. Very successful, owned my own business, and I also managed for a national company in the United States.

Very busy gal, and I was finding that anytime a guest would come into my salon and they had fragrance on, it was driving me nuts. I will say, all these years later, I had no idea I had multiple chemical sensitivities, but it was that one symptom that made me go out and seek help. It took me years, and I was going to every hospital in my area, bringing notes of all my symptoms.

And my primary care, who happened to be an infectious disease doctor, was sending me to different specialists. He was just listening to different symptoms that I had, sending me to specialists to see what was wrong with me. And after years, he finally looked at me and said, "There's nothing wrong with you. Everything is in your head."

I knew that was not what was happening. But I do remember through all my visits, one allergist had said to me, "Multiple chemical sensitivities." So I was so upset when I left that doctor's office visit, I went home and typed in "multiple chemical sensitivities" into my computer.

Two doctors in the country popped up—one on the East Coast and one on the West. I decided to visit the doctor on the East Coast. By this point, I was so sick because I was probably two or three years into being ill, but I had no idea what was wrong with me. Anytime I went into my siblings' homes, I kept saying, "I'm getting sick, and I don't know why."

I would shake violently when clients came in with perfume. Any kind of fragrance, different chemicals in my salon, were driving me over the edge. It was just not fun.

So after visiting him for quite a few years, I started my own foundation, Upstate New York Lyme Disease Association. Because my background was in public speaking with the hair care company that I managed, I decided, "I am gonna start speaking," and I started reaching out to every television station in my area.

I became a very popular guest at that point on different news stations, and then suddenly every news station started sharing my story.

What had happened to me—because I couldn't tolerate any of the fragrance. Little by little, I had to let my staff go. I had to ask guests that were coming into my business not to use any type of fragrance. I was called every name in the book. It was quite embarrassing.

People walked out on me, staff walked out on me. My family did not believe this was happening to me. It was pretty much told to me daily that it was all in my head. And you and I both know that it was not in my head.

So that caused me to just continue my advocacy for Lyme disease. At the end of the day, Aaron, I ended up losing my home. I lived on top of my business. I lost my home. I lost my business. My marriage dissolved. I lost most of my friends.

I had no place safe to live. I didn't have any money. It was a very scary time for me in my life. And until you're in those shoes and realize that you have no place safe to go and you can't go stay with friends or family because their house is not friendly to you…

I did not have a place to do hair anymore. Pretty frightening.

What I ended up doing is, I have a small camp up in the Adirondacks. I moved up there, and it was in the wintertime. I traveled back and forth an hour and a half daily to try to go to my clients' homes to maintain some type of income. And I did that for more than a year.

Very fortunate that I found a house to rent. And now I have the first scent-free salon, and I work with huge charcoal air filters. I no longer can offer permanent waves.

I believe that my chemical sensitivities started with my industry.

[00:08:29] Aaron Goodman: If you go back in your memory to when you first developed symptoms of MCS, what were your major symptoms at that time, if you want to share?

[00:08:39] Kathleen W.: The symptoms I noticed the most were brain fog. My heart would feel like it was coming out of my chest. I now know that my heart rate and my blood pressure will double when I get in contact with a chemical that I should not be near. I would shake uncontrollably. I found myself crying a lot, and now I know that was myself trying to purge chemicals. Those are probably the biggest ones that I kept wondering, "Why does this happen to me every time I get next to someone?"

[00:09:12] Aaron Goodman: Do you think the MCS came on gradually for you, or did it come on all at once?

[00:09:18] Kathleen W.: I believe the chemical sensitivities came on gradually for myself. I think the infection from the tick just put me over the edge, so I do believe for myself it was gradual, but the tick bite is really what sealed the deal.

[00:09:34] Aaron Goodman: Do you want to talk a little bit about how you knew which symptoms were attributed to which illness? Right—so which were MCS and which symptoms were Lyme? And is it sometimes not easy to know? Are they similar? Are they different?

[00:09:51] Kathleen W.: They are similar. And the way that my doctor described it to me, I was almost like an onion where we had to peel one layer at a time to see which of my symptoms were coming from the Lyme disease and which of my symptoms were coming from the multiple chemical sensitivities.

When I started with both of these, I had about 50 different symptoms. I had to write them down and then, little at a time as he treated me, we could see where different symptoms were being alleviated. Right now, I've been 16 years since I believe I contracted Lyme disease. I treated it for well over a decade.

I would say I've been in remission from my tick-borne illness for about two years at this point, but I still suffer with the multiple chemical sensitivities dearly.

[00:10:45] Aaron Goodman: Yeah. And what do you think and feel about that? That—is there effective treatment for Lyme? And we know that there are many things people can do for MCS, but there isn't a cure per se. Like, one thing someone posted on social media that resonates with me is "avoid and survive."

Of course, there are other detox things and a range of treatments, but do you think there's a treatment for Lyme and not a treatment for MCS? If I can put it bluntly like that.

[00:11:18] Kathleen W.: Yes, I do. Lyme can be treated with antibiotics. Supplements help as well, whereas with chemical sensitivities, the only cure is avoidance, which means avoidance from public places and friends and other people, which is awful.

[00:11:38] Aaron Goodman: Yeah. And you mentioned the medical dismissal—that the doctor told you it's all in your head. In your experience, have doctors been dismissive of the Lyme and the MCS, or has the dismissal been worse for one condition than the other?

[00:11:54] Kathleen W.: Dismissal has gone across the board for myself, especially because I'm also female. I found that to also be an obstacle. With Lyme disease, 15 years ago it was pretty much unheard of—even though it was out there, it was unheard of. And it's really not the physician's fault because they weren't trained in it.

So, without training, how would they even know? What I find ironic is my primary care doctor was an infectious disease doctor and totally dismissed the Lyme.

Multiple chemical sensitivities—you and I are the reason we're working to get people to understand that this syndrome does exist. So I believe now Lyme has come into the forefront. Chemical sensitivities need to do the same.

[00:12:46] Aaron Goodman: Yes. And you mentioned that the only way doctors will know about it is if they're trained and educated about it. In your view, is there enough information for healthcare workers about MCS?

[00:12:59] Kathleen W.: In my view, there is no literature on multiple chemical sensitivities.

Another personal story I could share with you is my OB-GYN. Every time I went into his office, you could see how difficult it was for me to breathe in his office and how I would shake uncontrollably. And I was finally told by him—this was just last fall—that I needed to stop faking my symptoms and that there was nothing wrong with me.

And that was a doctor that I saw for over 25 years. So he saw me before and he saw me after the tick bite, and they still don’t acknowledge that this syndrome exists.

[00:13:40] Aaron Goodman: And we're talking about MCS in this case?

[00:13:43] Kathleen W.: Yes.

[00:13:44] Aaron Goodman: How did you deal with that level of dismissal? What does that do?

[00:13:50] Kathleen W.: The isolation is unbelievable. The loneliness—I was brought down to absolute rock bottom. It is very difficult to have everyone that you love and know dismiss that there's anything wrong with you. Same with physicians.

My background in public speaking pretty much was just practice for what I'm doing right now. I have rebuilt myself. I know what's happening to me, and the more and more people that I meet that suffer with this—strength in numbers—we are going to make a difference.

[00:14:25] Aaron Goodman: What would you say to other people who work in the hair industry and other fields that involve using or exposure to chemicals? You've been really innovative with what you've done. A lot of people have to reckon with a lot of exposures. What would you say to folks in that camp?

[00:14:45] Kathleen W.: You never think it can happen to you. I never thought something like this would happen to me. You have to really look at the air quality inside of your salon. Do you have proper ventilation?

I'm not the only industry that suffers with this. Think about a mechanic. Think about all the oils and the chemicals they're involved with as well. You really have to get air filtration inside of your salon.

I don’t allow anyone into my salon if they have fragrance on. There are signs on the door—don’t even bother—because it does take me back for such a long period of time.

The chemicals that are in use today, I think, are a little bit better than they were 40 years ago, but they’re still extremely toxic. Make sure that you wear gloves whenever you are working with any type of chemical. A mask is a wonderful idea as well—even a shield—so that none of the chemicals can splash onto you and into your skin.

So the lower the exposure that you can do, I think the better it is for you in your industry.

[00:15:49] Aaron Goodman: How have media and people responded to you when you've been in touch with them about MCS and Lyme? Do they react differently when it comes to different conditions?

[00:16:00] Kathleen W.: I think they react a little bit differently with chemical sensitivities because it's the pure definition of an invisible disease. So they really don’t understand. When they’re interviewing me on TV, they don’t see what’s happening inside of me.

I do the best that I can to push the brain fog aside and do the best interview that I possibly can, but they still do not understand.

[00:16:26] Aaron Goodman: So maybe we could talk a bit about the hair industry a little bit more. What do you make of the products that are out there for mass consumption?

[00:16:35] Kathleen W.: You really need to try to focus in on fragrance-free products. Get as many fragrance-free products as you possibly can. The cleaner the product, the cleaner it is for you and your lungs. Your skin’s the biggest organ on your body, so that’s where you’re doing a lot of the absorption of these chemicals.

[00:16:55] Aaron Goodman: And how's your hair practice these days now that you've innovated and created it so it’s as safe as possible for you? I know that making fragrance-free zones can be really difficult, but more or less, is it working well for you? Are you able to continue your work?

[00:17:15] Kathleen W.: It is. I cannot service permanent waves—I will never be able to do another permanent wave—however, it is working.

And I will tell you, Aaron, I’ve had a lot of people find me because I am a chemical-free and scent-free salon. There are people out there who know they suffer from it. So they have found me. They love coming in because they’re not leaving with a chemical smell.

It’s not perfect. Trust me—it is not a perfect science. But I’m doing my best with it, and I find that the charcoal air filters are the biggest difference in my business.

In asking people and talking to them, I am very fortunate that I have a very loyal clientele. I’ve been doing this a long time, and they’ve watched me go from the top of my game to barely scraping out of bed in the morning to tend to them.

So they have seen the difference in me, and they do agree to come in without a chemical. However, if people come in with fabric softener on their clothes, that’s extremely challenging. And especially with men—if they don’t do their laundry and their wives do—that’s difficult, to go home and ask for no fabric softener at all or dryer sheets, because that seems to be what I react to the most.

[00:18:34] Aaron Goodman: Yeah, I’m in the same boat. And I think a lot of people are. I work as an educator at a university, and the fragrance-free policies are very difficult—not only there, but across the board everywhere.

Because you can ask people not to put fragrance on their body, but there needs to be more education about the laundry products.

We did an episode on fragrance-free policies on the podcast some time ago, and the person we spoke with, Muzammil Ida, who works at a meditation center in California, talked about how it’s an ongoing process. It’s not a matter of just putting up a fragrance-free sign.

And it sounds like that’s what’s been working for you. You know the folks who are coming into your space, and you’re able to have more than one conversation and go over it again if something’s not working. And it sounds like you may be able to address it.

[00:19:25] Kathleen W.: Yes, yes, I have. And the difference too is that I’m a single-operator business—so it’s just myself now.

When I had staff, it was very different. They didn’t understand because they weren’t feeling what I felt and didn’t have the symptoms with the chemicals.

I do hope that younger hairdressers listening to this really take pride in what they’re doing. We’ve got a wonderful industry, but it can also be very dangerous for your body.

[00:19:53] Aaron Goodman: Yeah, and would you please send me the name and link to your business? If you like, we can share that in the show notes for the podcast.

And Kathleen, how have people been responding to you and your work now that you offer a fragrance-free option for hair care?

[00:20:09] Kathleen W.: I find it’s a positive result with the clients that come in because they know it’s safer for themselves.

And a lot of my clients have actually changed their ways at home and no longer use fabric softener or dryer sheets, because they see what it has done to me and how damaging it can be.

So I believe it’s helped a lot of people to clean up the products they use on a daily basis to clean their homes and their personal care products.

[00:20:36] Aaron Goodman: We know people talk to hairstylists. At your business, are people talking with you and becoming more informed about safer products, whether it’s laundry products, cleaning products, hair products, etc.?

[00:20:51] Kathleen W.: Absolutely. On a daily basis. Absolutely.

And people will come in and ask questions as well. I feel like, for myself, Lyme was really the precursor to teaching me how to get education out there for chemical sensitivities.

I really believe in making a difference together, and I hope that we can.

[00:21:11] Aaron Goodman: One can only imagine that a lot of people in the hair industry must be impacted by the chemicals. Would you say?

[00:21:18] Kathleen W.: I bet most hairdressers out there have at least a mild case of chemical sensitivities—whether they realize it or not.

They might notice a difference in themselves when they’re working with bleach or with permanent waves, but not understand why it’s happening.

[00:21:33] Aaron Goodman: And I think that was certainly the case for me. For much of my life, I didn’t know. And that’s one of the goals of this podcast—just by talking about it and putting it out there, maybe someone will realize, "Oh yes, I do have this as well."

[00:21:49] Kathleen W.: And that’s why I share my story—because no one should go through what I went through. It’s time to educate the masses.

[00:21:57] 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 Brockman Hoffman Foundation and listeners like you.

If you wish to support the podcast, please visit chemicalSensitivityPodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS.

To learn more about The Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, Instagram, X, Blue Sky, 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, 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 podcast and associated website do not necessarily reflect the views and opinions of its sponsors.