[00:00:00] 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 and toxicant induced loss of tolerance or TILT.

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.

Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, can spark a cascade of debilitating symptoms. 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. Countless people across the world live in vehicles as a result of severe MCS, electromagnetic hypersensitivity or EHS, and other illnesses.

And we don't often hear their stories, but it's important that we recognize the challenges they face and their courage. In this episode, I'm speaking with Sue, who chose to keep her last name confidential. Sue identifies as an MCS and EHS refugee. She has lived in an RV for over a year in New England in the Eastern part of the US.

I first learned about Sue from her active Instagram account, which I encourage you to check out. Her name on Instagram is Canary Involuntary, and if you search for it, you'll find her. You'll hear Sue talk about how different living situations contributed to her health conditions, how she's coping living in an RV, and managed to deal with very cold and snowy conditions in winter, and how she continues to stay hopeful.

Aaron Goodman: Hi Sue, and thank you very much for speaking with me on the podcast. Do you want to take us back to perhaps where you grew up?

[00:02:58] Sue: I grew up in Northeastern United States, Western Massachusetts in large part. I guess I would say probably in my early 20s is when I really started noticing that I was getting sick.

I ended up having chronic illnesses that were still really unidentifiable, at least by western medicine. And I was having things like a lot of gastrointestinal problems and what eventually was diagnosed as fibromyalgia. So I was dealing with a lot of extreme body pain and fatigue. And I was working with doctors trying to get that under control, but really, you know, it was just a big push of medication and my body, unfortunately, was not responding well to medication.

And then I was getting met with denial that I was experiencing the side effects that I was experiencing. So that was really difficult and I just tried to continue with my life. I was always a hard worker. I had jobs where I was putting in a lot of effort and time and unfortunately there were a lot of unhealthy things in those jobs.

A lot of cleaning agents, a lot of electricity, a lot of microwaves. And so I really think that the environments that I was living in and the environments that I was working in were really compounding these chronic illness issues I was having.

[00:04:14] Aaron Goodman: What kind of work did you do?

[00:04:16] Sue: I worked as a daycare teacher for a lot of years, which was really rewarding in a lot of ways. But like I said, the environment was just not great.

I had to take a break from working there because I, I got so sick that I literally, I was in so much inflammation in my body that I couldn't walk anymore. I got to the point where I was really bed bound and I couldn't do anything. And so I worked really hard on figuring out what to do. How to heal from that and so I changed my diet, I just tried to change a lot of my habits and I did get to the point of getting, getting stronger, reducing the inflammation, getting to the point where I could work again.

And so actually the first job that I got after I was strong enough to go back to work, I was assembling gift baskets and I was breathing in these toxic fumes and I was just starting to get really sick again and I was getting, I was in so much pain and the inflammation was coming back. And I got to the point where I couldn't even stand up anymore.

And the job required that you stand at a table to, to do the work. And so I just, I could not continue. I was falling apart. I was too weak. And so that was a really big turning point of my sensitivities for me. I had always been sensitive. But I never really understood it or knew it or paid attention to it. I do remember like when I was younger, like driving in my grandparents' car and we were going to pick up my aunt and there were gas fumes and I kept saying, I'm really, I'm going to throw up.

I'm really sick. I'm going to throw up. Please stop the car. And they just kept saying, no, you'll be okay. You'll be fine. It's funny because you'll be fine is like this mantra now of like, in my life of if you can survive it, you'll be fine. But at the time, I mean, I wasn't fine. And as soon as they stopped the car, I vomited all over the sidewalk.

And it was just like the first of this not being heard, not being listened to. And I know a lot of people get carsick and it's not the end of the world, but like, for me, it was just like this intense like starting point of this is going to be a pattern in my life of I'm sounding the alarm and nobody's listening to me.

[00:06:24] Aaron Goodman: So you've been basically a year living in an RV. How did you find winter in the RV?

[00:06:31] Sue: The winter was very difficult. One of the added challenges to the RV living is that I'm not hooked up to electricity or water due to my sensitivities. Hooking the RV up puts too much electricity into the walls and I can't tolerate it.

And then even just hooking up like some sort of water pump is, again, I cannot tolerate the magnetic fields off it. Being super reactive to fuels and wood and electricity. Heating became really hard to figure out and so what I ended up doing was three different things. First, I had a little electric space heater and I was using that in the fall and I still was hoping to find a place before winter.

But I have to be at least four feet away from it due to the electric fields coming off of it. And that did okay for those chilly fall days, but once it started getting colder, I knew that I needed to figure something else out. What I ended up doing was taking a diesel heater, which because of the motor in it, I could not be near it, and I tested it, and it was quite a big magnetic field.

I had to have it at least four or five feet away from me, so I came up with an idea of creating a box outside for it, and then venting it in through piping. And it was making it very warm in here, however, because of the nature of the heating system, it was challenging because I had to make sure there was no spilling of diesel, but also because its components needed to off-gas.

So I was only using it for very short periods of time. So it took a long time to off-gas to the point where it wasn't making me sick. And once I got to that point, it kept me warm. However, it started putting out a lot of really intense fumes that were just like, I could not use it at all because it was making me really sick.

And so what I did instead was I bought a radiator heater, which is oil filled, and I used that pretty much like I used the space heater where I had to be really far away from it. Unfortunately, it was still really cold in here for a couple of months, but I just had to tough it out.

[00:08:42] Aaron Goodman: Yeah. And that really comes across in the images that you share on your Instagram. I want to ask you about the Instagram account that you run, Canary Involuntary. What kind of images are you sharing and what's the motivation for creating it and keeping it going?

[00:08:59] Sue: Yeah. The Canary Involuntary was, was an account that I started when I first moved into the RV and had just become homeless. And so it was a really difficult time for me because of the situation of my health where I was barely able to eat any food. So it was very weak and tired and I was dealing with these incredible sensitivities that not a lot of people are understanding of. So it was a very alienating point in time for me, and I just wanted to have some sort of outlet that I could share some of the experiences that I was going through with really anybody that was interested.

So there was definitely a lot of images relating to health and limitations, but I tried to mix it up with a lot of the positive experiences too. And the nature beauty that I feel very fortunate to be immersed in and also just some of the everyday living maintenance or chores, it's a mixture of vulnerability and like fun expression, I guess I would say.

[00:10:01] Aaron Goodman: I think there's a lot of vulnerability in it, and I'm thinking of images of your RV surrounded by really deep snow, and I think some tarps that you used, pictures of you in very cold temperatures that invoke in me, and I think in the public, a lot of empathy. I meant to ask, where are you?

[00:10:22] Sue: I'm actually on a piece of property. The property has a house on it that a couple lives in. But the RV is at the edge of this forest. I don't have too many people close by. I can't see them, but I can hear them occasionally.

[00:10:38] Aaron Goodman: Can you smell their laundry?

[00:10:39] Sue: I can, yes. I unfortunately still have a great trouble here with fragrances. There's a lot of fragrances around the houses as well as inside of the house on this property. And unfortunately I do have to go into it for my water because there's no water hookups outside. So I do have to go into the house daily and it is hazardous due to a lot of different fragrances and wifi.

[00:11:04] Aaron Goodman: Are they friends of yours?

[00:11:05] Sue: Yes. And I'm extremely grateful to them for allowing me a relatively safe place. I can't thank them enough. And they're really wonderful people.

[00:11:16] Aaron Goodman: When you moved into an RV, how did people in your life respond?

[00:11:21] Sue: It's interesting, I know I have family and friends that love me and care about me, but there's not as much interest as one would expect in my big change of living situation. It's like, a lot of people believe me, but maybe don't fully grasp the extent of what I'm dealing with.

And so it's also, there's definitely some disbelief in there too. So it's a confusing thing. I know I'm loved. I know people care about me, but I don't feel like I'm completely understood or really that the extent of what I'm dealing with, the extent of my sensitivities is grasped when I spend time with somebody or around somebody with a phone or with fragrance.

Just because I need to have some connection, sometimes there's always a great price to pay, and that's the part that people don't see.

[00:12:13] Aaron Goodman: You mentioned the disbelief, and it's sad that it still is something that we have to contend with, the disbelief. How do you view that? Even some researchers who further an argument that it's a psychological disorder, what do you make of that?

[00:12:34] Sue: I think it has a lot to do with a reflection of their own lifestyle. When I talk about how cell phones injure me, that makes people defensive, because in me explaining how that injures me, they have to ask themselves that question. Wait, does it hurt me? And of course the first immediate reaction is, No, I would know if it hurts me.

I use this all the time. This is a huge part of my life. I couldn't ever possibly give this up. I need it for work. Like the list of reasons of why they couldn't ever eliminate that or reduce that from their lives. And so it becomes a personal threat. And I think that's a huge part of why people don't want to go there in terms of believing or researching even, or even looking into it more because it's a threat to their own lifestyle.

And people get into these comfortable grooves in their lives, even if they're not healthy, even if they don't feel good and they're not emotionally well, they're still in these patterns of behavior because we're all trying so hard to survive and having to adjust one's life is really threatening. I do believe fragrance sensitivity, it is more accepted at this point just because people understand asthma.

A lot of people have an issue with even just one type of fragrance. Like, even if they don't consider themselves chemically sensitive, they might get really sick around perfume. And so, it's not as much of a stretch to say, Oh, this person can't handle perfume or fragrance laundry detergent. And not to say that people are very accepting of chemical sensitivity, but just in comparison to electro hypersensitivity, it is a little bit more understood, I would say.

[00:14:19] Aaron Goodman: Because people can't imagine going without the technology, where people may be willing to consider not using a scented product.

[00:14:28] Sue: Yes, yes.

[00:14:30] Aaron Goodman: Yeah. And when it comes to your Instagram account, Canary Involuntary, is part of your interest to inform, educate, and help change attitudes?

[00:14:41] Sue: Absolutely, that was the intention. I'm connecting with a lot of chronically ill people, even if they don't have the same exact specific sensitivities as me, and that's really valuable for a lot of reasons, but it also helps them and me understand more about the specific things that each other are going through. And I just think every little bit is helpful in expanding people's, their understanding of things and their willingness to be open to other things, even if they aren't dealing with them themselves.

[00:15:14] Aaron Goodman: For people who may be listening and may be in a difficult spot and considering moving into an RV or a vehicle, would you have any feedback for them?

[00:15:27] Sue: So if they're a sensitive like me, first of all, it's not easy, but it is doable. Preparedness is really important. You have to think of your basic needs and do you have access to water? Do you have access to refrigeration? If that's what you need, you really just make a list of the things you need. Try to figure out, first of all, the area you live in is going to make a huge difference if you're living in Arizona, you're not going to need a heavy duty heating system, which is going to be helpful, but you might have more issues, uh, finding water.

So it's really about learning as you go, accepting that there's going to be challenges, but you can get through the challenges. There are ways around it, and that people used to live without all our modern day conveniences for how many thousands of years? People can survive without these things. And it is difficult in our society because of the way that it's set up and because of our reliance on technology and convenience, but it is doable.

It can be very freeing and it can be very healing and it has been for me as well. Just getting out of the situation that I was in, which was absolutely traumatizing to my nervous system, it was, I honestly, I think I would have died if I had stayed in the situation that I was in. And even though right now it is difficult physically and it's isolating and there's a lot of great challenges, it is still so much healthier for me and I'm so grateful that I am where I am.

[00:16:59] Aaron Goodman: You're coming into a summer and it does get very hot there and in other parts of the world, people deal with wildfire smoke and air pollution. It's not going to be an easy ride going forward. What kind of strength does it take to do this?

[00:17:16] Sue: All of your strengths. It takes a lot. It takes a lot because it's not just the physical, it's the emotional toll of living like a refugee. I consider myself a refugee and it's hard to find safety, and I haven't found it yet, not complete safety, but it takes a lot of talking yourself through stuff. You know, you're gonna fall down a lot of times, and you have to pick yourself back up. And sometimes you don't feel like you have any strength at all, but you have to do it because that's what's required of you.

[00:17:49] Aaron Goodman: What was the toughest thing you had to do this year?

[00:17:53] Sue: The toughest thing, I would say was the winter because I was, I took a downturn in my health in terms of eating, and I lost my ability to eat once again, and I was dealing with this heating situation and being cold and having to still do my chores, having to haul water and, and stuff like that.

Just honestly, just surviving being so extremely fatigued and my muscles not carrying me any further. Having to stop on my way back because I could not continue. I couldn't walk up the hill and I thought, am I just going to die here? And then it's just, okay, I just got to get through it. So there's been a lot of challenges like that, or I would even say in the summer, last summer, it was really rainy.

And so the mosquitoes here were so incredibly horrific and I didn't have a screen tent. I was either in the RV or I was in the mosquito zone, you know, I was getting all of these bites and I was getting hives all over my feet and it was like this maddening, burning itch. So that was also a really tough time.

[00:19:01] Aaron Goodman: And then you put on top of that the economic challenges that a lot of people have to face while moving into a vehicle and moving outside of urban areas. How have you dealt with that?

[00:19:13] Sue: It's been hard because I've spent a lot of money on my health needs, and I had already invested a lot in supplies, heating supplies, the insulation supplies, endless camping supplies that luckily I don't have to buy every year, but in the initial phase of setting something up, you spend a lot of money, and it's hard to save money.

At least in my financial situation, I'm trying to work on finding a piece of land that I can live safely on. And that's extremely difficult in this housing crisis. It's just unrealistic. And it's also hard to make money when you're chronically ill, or even if you're just living remotely and you're not ill, I think it's a little more challenging.

[00:19:57] Aaron Goodman: Do you mention, do you do some sewing?

[00:20:00] Sue: Yeah, I do. A couple of years ago at my previous apartment, I had started a sewing business. My initial intent was to make masks for chemically sensitive people. And so I, I had never sewed before and I didn't know how, but I researched it and I bought myself a sewing machine and I taught myself how to do it.

And I ended up not actually selling the masks for chemically sensitive people because I couldn't source the material I wanted for the filters because folks like us can only handle certain things and it was just, I couldn't find the right material and I refused to make it with stuff that I didn't feel good about.

So I ended up making reusable menstrual pads instead because that was another area that I feel very strongly about that is their conventional pads, tampons, feminine supplies have a lot of chemicals in them. And so I felt good about making something that could help contribute to, to reducing that load on people.

I did that for a couple of years and it was really good. And I had a great response from people. And I still talk to people that were customers of mine that are just really nice people now. And I consider them pen pals actually, but I had to stop sewing because my electric sewing machine was frying me so bad because of the magnetic fields coming off of it.

And so I stopped that before I moved. And I was really sad about it because it was something that I had, I had built up and I had started and I was going good with, and then I had to stop it. But what I actually ended up doing a few months ago was buying a 1947 hand crank sewing machine. And so it needs no electricity.

It doesn't injure me in any way. It is a little physically challenging just because of my muscles are still working on healing and it is a hand crank so it takes that strength from my arm. But I've started making and selling Faraday EMF shielding phone pouches for people's cell phones. Because obviously that's something that's important to me, even though I don't use a cell phone myself, I'm just about most of the rest of civilization does.

Again, I wanted to make something that I felt good about, something that would help people. And so I'm making two kinds right now. And one is you can put your phone in it and it shuts off all signal completely, but you can still use it as an alarm as a lot, a lot of people like to do, or if you just want to carry it around and have easy access to just pulling it right out.

And then the other one I'm going to be making is, it just shields on one side, so you can still carry it and have all your signal, but it won't be putting as much radiation in your body as if you were just carrying it in your pocket. Yeah, and I just started another Etsy shop for that, and I'm going to be adding more stuff as I go along, because it's obviously something that is a huge factor in my life, and if I can help anybody else, then I really want to do that.

And if I can make a little money off it, which it's going to be helpful in finding a safe place to live. I want to do that as well.

[00:23:00] Aaron Goodman: That's really great. And is there anything else you'd like to share with listeners?

[00:23:04] Sue: I just feel like a really important thing to consider as we all go through life is learning to pay attention to our bodies, learning to recognize what we are actually feeling, not what we are being told is okay and safe, but what we are actually feeling in our bodies.

Because we are electrical beings and we are affected greatly by our surroundings and all kinds of post electricity is not natural to our own energetic field. I would say please protect your children. Please protect yourselves because it will harm you if you just keep letting it go. And life can be really beautiful.

Humans are capable of amazing things and we can work together and we can still use our technology, but in safer ways.

[00:23:53] Aaron Goodman: Thank you so much, Sue, for everything.

[00:23:55] Sue: Thank you.

[00:23:56] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm the host and 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, Thank you. 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 keep up with the Chemical Sensitivity Podcast and learn more, follow the podcast on Facebook, YouTube, Instagram, TikTok, and X.

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.

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