[00:00:00] Aaron Goodman: Welcome to the chemical sensitivity podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time 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, and more.
Trace amounts of chemicals and synthetic fragrances in household and personal care products can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by healthcare providers, employers, and 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.
[00:01:41] Aaron Goodman: In this episode, I'm speaking with Scott Deniska, an independent scientist with a background in biology and genomics who has MCS. We talk about what is one of the greatest challenges that people with MCS face, finding environmentally safe housing. It's something Scott has grappled with and has shared insights about on his YouTube channel, along with other important topics.
I'll share the link in the show notes for Scott's channel.
After five years, trying to rent environmentally safe apartments in Massachusetts, Scott currently lives in Connecticut on the East Coast of the United States.
[00:02:26] Aaron Goodman: Scott, thanks so much for joining me on the podcast.
Scott Deniska: Thank you for having me.
Aaron Goodman: Would you like to talk a little bit about your own experiences with MCS and let listeners know where you're coming from?
[00:02:35] Scott Deniska: Yeah. So I became chronically ill back in 2017. I was a researcher working in a lab and I was handling a chemical in the lab about a week before I was leaving that job to go back to grad school. And I became a couple of days later, very severely ill, like just pale, flush, sweating, very sick. And for about four years, I was diagnosed with POTS and chronic fatigue syndrome. And because of my research background, I spent so much time looking at all the publications, running new tests, trying to figure out what was wrong with me. And I considered that whatever sickness I had, all related back to that chemical exposure. However, it wasn't until in 2021, I moved to a new apartment and I started getting really sick every time I walked in the door. And then when I walked out of the door, I'd be fine. And it was really weird because, you know, I'd been sick for over four years and I had never noticed any environmental sensitivities at all. But it was very obvious when I moved into this new living situation. And so I realized that I had multiple chemical sensitivity and different factors in my environment that I was exposed to was driving my symptoms.
[00:04:00] Aaron Goodman: If we can go back to that exposure to the chemical in the lab, and we know researchers call that the TILT event, right? Toxicant induced loss of tolerance. So it can be a single exposure to a chemical or prolonged exposure at smaller doses to chemicals that create this hypersensitivity to all kinds of chemicals. Do you see that event in this way, Scott?
[00:04:26] Scott Deniska: I definitely absolutely consider it my triggering event. In fact, I'm not the only person who has been exposed to hydrazine and developed chronic fatigue syndrome and multiple chemical sensitivity as a result.
This TILT, this toxic exposure event, I think there are a number of variables that go into it. So number one is, what you're exposed to, different chemicals and so forth. Number two, what level were you exposed to? So how much of it were you exposed to a lot all at once or a little bit over a long time? And then number three is genetics. So depending on what genetics you have, there's been some great studies recently, relating back to exposure of sarin gas to that veterans had during the Gulf War and developing gulf war syndrome from that and there are now studies that prove certain enzyme mutations that correlate with gulf war syndrome. And those enzymes are responsible for metabolizing that sarin gas. So you can absolutely have a genetic susceptibility, but in my personal opinion, I think the environmental factors so what you're exposed to and how much has a bigger effect.
[00:05:43] Aaron Goodman: For people like me who aren't familiar, what is hydrazine?
[00:05:46] Scott Deniska: So hydrazine is used as rocket fuel. Uh, so not many people handle it. Mostly government officials working on military bases and so forth. So it's a highly volatile substance. It's extremely toxic and it will evaporate very quickly.
[00:06:06] Aaron Goodman: Do you want to talk a little bit about following your triggering event, you mentioned some of the challenges you had with housing.
[00:06:14] Scott Deniska: Yeah, so my housing situation that I was in in 2021 was incredibly difficult. I really would not wish that upon my worst enemy because I was in a situation where I became sick from the housing that I moved into. I had a year long lease and I have to try to break that lease, find a new safe place, move everything.
I'm chronically ill, chronically fatigued. And trying to find the energy to do all that. And this crazy difficult housing market. However, something good did come out of that experience because I was in the situation where I was forced to move from house to house, to house, to house. I stayed at a variety of really toxic places over a course of about six months.
And because those housing situations were so different from each other, it was much easier for me to identify where is that trigger coming from? Where's the source of that problem? So now my situation is, even though I'm still really sensitive, I feel that, you know, there is hope I can get better with the right housing, the right place. And my experience with that housing problem taught me how to find that.
[00:07:30] Aaron Goodman: All right. And I've been following your posts on social media for a number of years now. And if, if it's too personal, let me know. But do I recall correctly that at one point you moved to your parents’ house and were living on a screened in porch or something of that nature?
[00:07:47] Scott Deniska: Yeah, so I'm still in that situation right now and I, a lot of people struggle with that and I really get it. People with multiple chemical sensitivity and chronic fatigue syndrome and these chronic illnesses, you're so sick and you need accommodations, right? You're sensitive to cold, you need help from family, you need that support.
And it's really difficult for people to say, hey, my living situation isn't working. I've got to change that. And my short term, uh, resolution, my short term answer to that problem is even though I really didn't want to start sleeping outside, get away from the exposures at least while I'm sleeping. So that you can rest, recover from it, detoxify, get your lymphatic system working. Sleeping in a place, in an environment that I wasn't exposed to chemicals, that helps me tolerate being inside during the day.
So that really worked for me. I feel like it saved my life. I think it's difficult, but there's a lot of people that if things get really bad, Sometimes you just gotta get up, you got to move, got to get yourself to a better living situation and you might be surprised how quickly you improve.
[00:09:06] Aaron Goodman: Can you talk a little bit about where your folks live, what the screened in porch looks like, and what the weather was like, and what kind of bed did you sleep in, was it cold, was it hot, etc?
[00:9:19] Scott Deniska: Yeah, I mean, it's been really difficult. Obviously, sleeping outside year round when I'm in Connecticut is not great. During the winter, temperatures can get below zero here. I'm able to deal with that by using a heated blanket, an electric blanket, and that kind of keeps me going during the winter. It took actually several months to kind of develop a sleeping system where I can stay warm, but also get ventilation from, you know, the outside and somebody said to me, oh, well, why don't you put tarps up or something around the porch to, you know, keep that warm? And it's like, well, if I, if I close everything off, then that defeats the point of the ventilation of being out there. But yeah, I had to set up a kind of sleeping situation where, you know, I'm using sheets that are made of cotton and organic and, you know, using the right detergent.
I was using for two years, I was using a plant-based, fragrance-free, No dyes, says non-toxic on the label, detergent. And I just kept getting sicker every day, day by day by day. And it wasn't until I was like, hey, maybe I should change my detergent and I switched over to a powder instead of like a liquid detergent. I mean, massively better within 24 hours. It was, I was brought to like tears. It was like such a big difference. And it wasn't obvious. It wasn't obvious it, you know, I had to keep eliminating things one at a time in order to get that improvement. But when you do eliminate these things that, that are sort of large sources of VOCs, it makes a huge difference.
And, and I think I attribute to the problem with that detergent, even though it's organic, they used a preservative in it. And that preservative is a known neurotoxin, you know, when you wash your whole sheets with that and then you're sleeping in it and you're putting your face in the pillow and you're breathing that in, uh, you can imagine for somebody with chemical sensitivities that that's a problem.
[00:11:23] Aaron Goodman: How did your parents respond when you broached the topic with them about… Or maybe they invited you. I'm not sure. How did it, uh, transpire? And do you consider yourself fortunate that you have this opportunity to stay with them and how, how has that been?
[00:11:39] Scott Deniska: Yeah, I'm, I'm certainly fortunate to have that opportunity. The living situation here is absolutely better than all the other apartments that I stayed at in Boston, it's not the ultimate answer for me. I am looking for another move to get out by the coast. Coastal air is just awesome for me. It's great for me. I feel like a different person revitalized, but this is kind of my intermediate place.
I think, you know, especially for my mother, it is hard. Because, you know, when you just love your kid, you want the best for them. You want to take care of them. It was hard. She didn't want to accept it for like, a month, but afterwards she did end up accepting it and she saw the improvement with me. And I think that gave her some relief is like, okay, he's acting more like himself now, you know, and so she came around to realizing that was the right call.
[00:12:32] Aaron Goodman: Have you ever shared the science with your parents? I know a lot of people share information with loved ones and people in their lives because of the level of disbelief and dismissal. Has that, how has that been for you?
[00:12:44] Scott Deniska: Yeah, I, I share every single thing I do with my parents and they're behind me a hundred percent. My mother has watched all my videos that I've made and read papers that I've written and even my grandmother has as well. So they, they definitely understand.
[00:13:03] Aaron Goodman: When it comes to finding environmentally safe housing, would you say that is the greatest challenge for people with chemical intolerance, multiple chemical sensitivity?
[00:13:16] Scott Deniska: Absolutely. I 100 percent believe that, it's not just difficult because of the, uh, components that are used in housing, like the type of wood and so forth. That's not the only reason, you know, certainly availability is a problem. So for example, there's one partially subsidized housing complex in my state for people with disabilities.
And the waitlist is eight years. And then I'm on a waitlist for a voucher program in Massachusetts. And the waitlist for that is 14 years. And so when you're talking about you know, housing, uh, help being 10 years away. I mean, that's unaccessible, right? Also costs can be prohibitive. Housing prices are just at crazy levels.
And, you know, when I started my journey three years ago, looking at apartments compared to the housing prices that I'm seeing now, it's like 50 percent more rent for the same exact unit. And so when you're chronically ill, you either can't work or can't work very much, how are you going to pay a 50 percent increase in rent, which is your biggest expense?
And when you have somebody else owning your house, that landlord, their goal is to extract the most profit that they possibly can. And so they're going to, you know, if there's mold, they're just going to paint over it. They're going to try to get rid of it as cheap as possible. And then if they need to, you know, put, uh, new boards up, they're just gonna slap on more varnish.
And when they buy varnish, are they buying the organic, safe kind? No, they're buying a container of formaldehyde, whatever's cheapest. Because they don't have to live there, they're not exposed to it, so they don't care. But, who ends up paying the price is the person renting the place. So, for multiple reasons, it's an extremely big problem and one that I'm trying to work with other members of the community to change.
[00:15:16] Aaron Goodman: Okay, we could maybe talk a little bit more about that, but what are some of the greatest challenges? You mentioned formaldehyde in varnish and other chemicals that are used in home renovations and builds. What are some of the biggest triggers for people with chemical intolerance?
[00:15:34] Scott Deniska: Yeah, absolutely. So, I think I'd like to start talking about this by going at the bottom of the list in terms of severity. So at the bottom of the list, I put metals and a lot of people think, oh, metals are safe. Well, metals can, can rust and you can, if somebody's grinding metal metals can have a smell. So if you have a tool shed with a bunch of metal tools, it has a metal smell to it. So that's actually a source of exposure.
Another one is smoke. So not just from car exhaust, but where I'm living now, I'm in a more suburban area. So I have to battle with all my neighbors running their chimneys and I have to keep on top, especially with the wildfires that we had last year. I have the app on my phone to monitor when that smoke hits and then to close all the windows, turn on the air purifiers, take my vitamin C and, you know, try to manage it best I can.
Everybody around me is just battling. Burning fire pits, fireplaces, smoke is a big problem. Mold, everybody knows what mold is. But what I've learned in my experience is, it's not just mold inside that's a problem. Mold outside can be a problem too. Because where I was living in Boston, that first apartment I moved into, it had a mold problem.
So I bought some mold test kits, and I put them all over the house, and then I put one outside, and then I put one inside. And all the kits that were inside the house had very little mold, but the kit I left outside was absolutely coated. It was disgusting how much mold that had. So anytime the windows were open, all the mold from outside the house was blowing inside the house and causing me to be sick.
So I think it's important to consider where the house is, not just what's inside the house. And then above that, I put VOCs. So, volatile organic compounds, you get that off gassing from plastics, fragrances, varnish, things like that. For me, that gave me a really like, stimulated, wired feeling, like I couldn't rest, I couldn't relax, I couldn't recover, even if I wanted to.
And then, at the top of my list, the worst exposure I've had was to particulates. The way to think of what, what are particulates. So if you've ever seen somebody with an electric saw and they're cutting, you know, some bricks and you get that dust in the air, those are particulates. But, um, what I learned is you can get those types of exposures from paint.
And so to give you know, some of these apartments that new, fancy, modern look, a lot of these landlords use matte white paint and what matte white paint is, is there is a very, very high ratio of the substance in the paint called titanium dioxide, which is our particulate to the paint. The binder that's used to hold those particulates together.
And it's, the example, the comparison I can give is like if you had a piece of construction paper and you took a glue stick and then you put some sand on it and you left it there and you had it sit for a year on the wall. After about a year, about half that sand might fall off. And that's kind of what's happening with this paint. If you run your finger across it, you can see white dust come off on your finger. And when that gets in the air, if you've got something like. central air system in your house, it's just, it, it's not going to help to open your windows and air it out because it's just going to circulate over and over and over. And that particular exposure from that pain is what gave me chronic pain, chronic fatigue and brain fog. Some of the worst symptoms that I've dealt with.
[00:19:11] Aaron Goodman: Is it sometimes something that people can wait out? In other words, if I just wait a year, more, or try not to move into a newly renovated space, a new build, does time help?
[00:19:28] Scott Deniska: I would say, in most cases, no. In some cases, yes. I would like to say time does help, but um, you know, take for example, I had this bookshelf in my room. And it was a pretty large bookshelf and I've had it for about 30 years now. And last year I got rid of that bookshelf and it had this kind of sticky varnish on the wood.
It was probably the best thing that I did for my health last year is get rid of that bookshelf. It was an incredible improvement and that's 30 years old. So depending on what, what the substance is, a lot of the times you can't do anything about it and waiting it out won't help.
The biggest thing is selection of the housing. And then once you've selected the best housing, you can find there are some things that you can do to improve the air quality. So, you know, if there are chimneys and basements in my own house, I have that taped off with tape. I feel like that helps me a lot. If you've got like one apartment I stayed at, in the back of the refrigerator where the fan is, there was tons of mold sitting in the back of that refrigerator fan.
And I got the landlord to get rid of the refrigerator. And that helped massively with that apartment. And then there's things like air filters. So there's now these MERV 13 air filters like air doctor that can remove like small particulates in the air. And I think those are really good for kind of clearing out a place to run it periodically.
But I think it's not a great thing to run all the time because those air filters themselves can off gas and actually increase VOC exposure in the house. So there are some things that you can do to help, but in a lot of cases you can't. And so that's why I really advocate. Do the absolute best you can in selection of finding the right place.
[00:21:22] Aaron Goodman: And we know it, it can be extremely challenging for people given financial challenges and lack of options.
[00:21:32] Scott Deniska: Oh, absolutely. Absolutely. I can't tell you the amount of times I've talked to friends and family and been like, today's the day I'm packing the car up. I'm just throwing all my stuff in and driving somewhere until I find better air. I've been up to that point countless times over the past couple of years, and I haven't done it because I'm worried about losing my support, losing my resources, or getting into a worse situation than I'm already in. It's really scary. And so I sympathize with people a lot. It is a very difficult thing to do. So, yeah, you don't want to go out of the frying pan into the fire, so to speak, and get in a worse situation. And that's what people are afraid of, but whatever people can do to improve, uh, their current living situation, eliminating fragrance in their products, taping off the chimneys so that soot doesn't come in, smoke doesn't come in, you know, things like that I think can help people get by to the point where they can really do their homework and put in effort to find the right place.
[00:22:43] Aaron Goodman: When people are looking for a home, do you recommend people use VOC meters or mold detectors? I've heard mixed things about VOC meters.
[00:22:54] Scott Deniska: Yeah, so VOC meters don't actually measure the VOCs themselves. They're measuring a change in impedance, which correlates with certain VOCs. So it's not an entirely accurate measurement. You'd have to send a sample out to a lab to get a really technically accurate measurement. I think people can use them as like an aid, like a, like a tool to help. But I think if you're chemically sensitive, the downside is, you know, you suffer with this illness all the time, but the upside is, most people are aware pretty quickly of what affects them. And so I think, listen to your body. Your body will tell you, like, if it's saying, hey, I don't feel right here, something doesn't feel right, listen to your body. And I think most of the time you can tell, especially for people that have had it for a few years and are more familiar with your triggers.
[00:23:49] Aaron Goodman: Do you want to talk about, uh, whether it's possible to make a safe space in a house or a home that is contaminated? Any practical things people can do?
[00:24:00] Scott Deniska: I think that can be difficult to do, but I think it depends on how the airflow in your home works. A lot of times, the airflow will move from the lower floors, and it'll go upwards into the upper floors. So I think you have to pay attention to how that airflow works, because if there's sources of contaminants, like from your basement and chimneys and other rooms in the house, you don't want to introduce those to your room, but at the same time, it can be a really good thing to like take advantage of those air currents. For example, my house has an attic ceiling fan that's very large and if I open a window and turn that attic ceiling fan on, if I've got even terrible chemical smell in my bedroom, if I turn that fan on, we're talking within 30 seconds, it just gets flushed right out. And so having that fan really pull large volumes of air from outside helps massively. And so that helps me mitigate some exposures.
[00:25:04] Aaron Goodman: And as you pointed out, sometimes the air outside can be problematic, whether it's wildfire smoke or laundry smells, dryer sheets. A lot of people. I think are interested in knowing about sealing windows and sealing doors. So fumes don't enter the house. Do you recommend something like that if needed?
[00:25:25] Scott Deniska: The problem is that almost every product that we have nowadays is made of some type of plastic that's off gassing. So in, in most people's homes, even in people with chemical sensitivity, your sheets, your desk, your chairs, your, you know, your clothes, every little thing you have might off gas a tiny, tiny bit.
And if you totally seal off your room and you never let any air in ever, that just accumulates over time. And I think that contributes to a lot of people's symptoms being worse in the winter because they're kind of closed in and confined. So I think when there are exposures from outside in terms of air dryer smells and smoke and things like that.
I think people can take, like, there's certain tape that's made that's low VOC and just tape off, you know, around the gaps in the door just to block that and save yourself from those exposures. But I do think at least every once in a while you really got to open things up and air it out and, you know, check the app. There's a air quality monitoring app that you can get, wait for a really good air quality day and just open everything up, turn the fans on and, and get rid of those VOCs that have accumulated…
[00:26:43] Aaron Goodman: And wait for a day when a lot of people are hopefully not doing their laundry with synthetic smells and fragrances? Um, As we aim to wrap, perhaps, do you want to talk a little bit about, uh, you mentioned some efforts you're doing to try to create change, uh, when it comes to more accessible environmentally safe housing?
[00:27:06] Scott Deniska: Yeah, so I was leading a advocacy group last year, and we had a focus on creating legislation that would give Allocate certain funds that HUD has to developing chemically safe housing. There needs to be more than, there's currently only like one multiple chemical sensitivity housing complex in the country.
So there needs to be more than that, but also creating guidelines for, uh, people who built housing. So when you have housing materials, there are different options you can choose from. Some are more toxic, some are less toxic. Let's just get rid of the more toxic ones. Easy solution. There's no downside, no cost. There's no, there's no problem with doing that. I'm putting out a paper later this year on a chemical called limonene that is in 77 percent of fragrance products and how that triggers multiple chemical sensitivity. And so that's getting published in October.
[00:28:04] Aaron Goodman: Well, thank you very much, Scott, for taking time and for sharing your insights and knowledge with us.
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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.