MCS Podcast Book Club: "The Sensitives"

Episode 57 of The Chemical Sensitivity Podcast is available now!
https://www.chemicalsensitivitypodcast.org/

It’s the first in an ongoing series that we’re calling The MCS Podcast Book Club. 

I’m speaking with four women with Multiple Chemical Sensitivity (MCS) — two in the U.S. and two from Canada. They are Caren Kirk, Donna Reid, Jacqueline Rice, and Ronda Sternhagen.

The women share their thoughts about the 2020 book, “The Sensitives: The Rise of Environmental Illness and the Search for America's Last Pure Place” by Oliver Broudy. 

The book is about a journey Broudy took to try to understand MCS. We discuss how the author conducted a lot of research, outlines how we are all exposed to toxic chemicals, but according to my guests, fails to put the false argument that MCS is in our heads to rest. 

Share your thoughts about the conversation and the book.

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Chapters

• 0:00 Introduction to the Chemical Sensitivity Podcast and its host Aaron Goodman
• 3:52 Participants introduce themselves and their experiences with MCS
• 4:41 Initial thoughts and reactions to the book "The Sensitives"
• 9:30 Discussion of the book's language and historical content
• 13:41 Examination of the psychogenic argument regarding MCS
• 19:34 Analysis of theories presented in the book, including TILT and the "rain barrel" theory
• 26:16 Critique of how the author portrays people with MCS in the book
• 30:01 Final reflections on the impact and value of reading "The Sensitives"
• 34:15 Concluding thoughts

Transcript

[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.

Small amounts of chemicals and synthetic fragrances in household and personal care products, paint, construction materials, along with pesticides, cigarette smoke, carpets, plants, and more 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.

I'm excited to share that this episode is a little bit different than what we normally do. It's the first in what will be an ongoing series of episodes about books focused on MCS. We're calling it the Chemical Sensitivity Podcast Book Club. We're also looking forward to sharing episodes from the Chemical Sensitivity Podcast Film Club.

The purpose is to invite people with MCS to read books and watch films about the illness, and explore them on the podcast. For this episode, four people with MCS discuss the 2020 non-fiction book, The Sensitives: The Rise of Environmental Illness and the Search for America's Last Pure Place. The author is Oliver Broudy.

Before sharing the conversation, I'd like to read a brief summary of the book from its publisher, Simon & Schuster, for listeners who may not have read it. Broudy encounters Brian Welsh, a prominent figure in the EI or environmental illness community and quickly becomes fascinated by his play. When Brian goes missing, Broudy travels with James, an eager trusting sensitive, to find Brian, investigate the disease, and delve into the intricate Ardent subculture that surrounds it.

Their destination, Snowflake, the capital of the EI world. Located in Eastern Arizona, it is a haven where sensitives can live openly without fear of toxins or the judgment of insensitive normals. So that's a brief summary about the book. You'll hear Karen Kirk in Quebec, Canada, Donna Reed in Ontario, Canada, Jacqueline Rice in Wisconsin in the U.S., and Rhonda Sternhagen in Texas in the U.S. I'm really grateful for all four individuals for reading the book and sharing their thoughts about it on the podcast. 

Well, welcome everyone. Thank you so much for taking time to speak on the podcast and for reading this book. I'm really looking forward to getting into this. So before we do, how about, would you like to just introduce yourselves?

[00:03:52] Karen: Hi, my name is Karen. I've been suffering from Multiple Chemical Sensitivity since I was a young girl and really just didn't know what was going on with me. So, really pleased to find this community and to be learning a bit more about it.

[00:04:10] Aaron Goodman: Well, thank you very much. Who would like to share next?

[00:04:12] Donna: My name is Donna, and I was diagnosed in about 2001 with multiple chemical sensitivities.

[00:04:19] Aaron Goodman: My

[00:04:21] Jacqueline: name is Jacqueline, and I was diagnosed in late 2003 with MCS after acute carbon monoxide poisoning, which is apparently not an uncommon cause.

[00:04:33] Aaron Goodman: Thank you, Jacqueline.

[00:04:34] Rhonda: I'm Rhonda. I'm shocked that people are saying I have a diagnosis. Because what I'm being told is that it's not real.

[00:04:41] Aaron Goodman: I'd like to invite you to talk a little bit. Did you like the book? Would you recommend it?

[00:04:46] Rhonda: I have already started sending it to my family. I sent one to my mother, who I've been no contact with since 2019. It explained to me things I didn't understand, and I didn't know I had a community. This was life changing. My whole family still has this attitude that it's not real. They know something's wrong, but it's all my fault. There's no acknowledgement that there's really an illness going on.

[00:05:13] Aaron Goodman: Rhonda, thank you so much for kicking us off. Karen, what are your thoughts on the book? Did you like it, not like it, recommend it?

[00:05:20] Karen: Oh, I'm really pleased to hear that it had such a positive effect on Rhonda because unfortunately I didn't really like the book, I have to say. I love to read, but I found it difficult. I found sometimes the language was quite heavy for what I thought the book was trying to do. I really have a problem with the actual terminology, the language that the author used when describing the sensitives. Coming from like, the chronically ill community in the last little while, I don't like some of the terms that we use and I don't think it's necessarily helpful. I can understand that maybe the journalist was trying to be neutral and trying to present the fact that there are doctors and other people who question the validity of the disease, but I think language is important, and I think he went too far in, in some of the usage of the language.

[00:06:21] Aaron Goodman: I'm really glad you raised that point, Karen, because the book is called The Sensitives, The Rise of Environmental Illness, and The Search for America's Last Pure Place. But throughout the book, the author, Oliver Broudy, uses the term, Environmental illness, and most commonly, and the sensitives, and I'm really glad you raised it, and if we can, let's come back to it. I'd love to talk to you more, and all of you, about your thoughts on the term, the sensitive.

[00:06:50] Rhonda: In the last 20 years, that's the way the community has referred to me. Family, friends, associates, they call me sensitive. That's the term they would use. I would use the term tilted. I found the book to be a snapshot. To me, it was, people need the history, but they also need to know that it has truly impacted lives. So I think you need both the fact that this is a human story, and this is also a community, and that history is so important to get validated. But, it was a hard thing to read. I had to actually get it on Audible. And listen to it two or three times because I can only handle it in pieces. But it's because it told my story and the story of the people around me.

[00:07:40] Aaron Goodman: Yeah, thank you so much because I think that's really important. I didn't want to gloss over the fact that it is a human story. Donna, would you like to share your initial thoughts?

[00:07:50] Donna: I did not like the book. To start with, the book came and you were very kind to send it to me, and I think my first message to you was, Oh my gosh, the book stinks. So, I was, I had trouble being in the room with the book. It was like a bleachy, kind of, sometimes recycled paper, or like that. And so, I of course then had to do some of the aberrant behavior that he said. Google to find out what that was. I put it outside on, I had a clothesline. I would use it, but I keep it with my charcoal. It's my life, right? So I had trouble reading the book cause, cause I was allergic to the book. Literally allergic. And then I found it wasn't good for my self-esteem because I Googled more of the words and I feel I'm fairly intelligent and fairly well read. So there was that. And I also found it really triggering for me, as Karen has mentioned, just the wording, the language, it just seemed very condescending.

[00:08:48] Aaron Goodman: Thank you. It's interesting. You mentioned the word aberrant that Oliver Broudy uses to describe some of the behavior and he chooses some types of behavior that I think he represents as being quite common, but I don't think they really are like, you know, he talks about someone not washing for a period of months because of laundry products and hanging newspaper out, and, and other things, which are not really that typical. And he does call them aberrant and I'm just Googling it now. And it Yep. It means departing from an accepted standard, what might be an othering of people with Multiple Chemical Sensitivity and something we can come back to. And I'd love to talk to you more about it. Jacqueline, would you like to share some initial thoughts?

[00:09:30] Jacqueline: Yes, I found the word the sensitives alienating. I don't think anybody uses it besides him. Who calls people with MCS the sensitives? Once I realized after about 180 pages that he was giving a lot of medical history in general. Well, I know he did a lot of research. I'm a librarian and I saw the footnotes at the end. So I give him kudos for that. I think he could have done a little bit of condensing. I think he could have mentioned one person who lived a somewhat normal life with MCS because we are out there and I think we're the majority. I don't know anyone living on the fringe, and I felt like it made us, the whole group of us, look like

[00:10:11] Aaron Goodman: we lived in the forest. On that note, thank you, Jacqueline. I, for some reason, I thought it was a novel. Right? So when I started reading, and I thought, I'm not really buying this story. Like, the premise, I just didn't believe it. But then I realized, okay, it's not a novel. It's a work of nonfiction. So the author actually does go on this journey, but I found that more to be like a device. So I found myself skimming through those journey road trip parts. So I think the author was trying to possibly write like the great American road trip novel or book rather, and combine a lot of research. And that's the part that I really appreciate because I did learn a lot. I see it as a valuable book that one could potentially take their time with. It's not super accessible in terms of the language. It is rather complex. It's a dense read, but I think it's very comprehensive. This doesn't say everything about the history of MCS and all the theories and But there's a lot in there. So I appreciated how he does go into how it was first noted and then different theorists, and then he comes to Dr. Claudia Miller's theory on tilt, which I want to talk to you about and check in with you about, but in terms of the overall structure, because we're talking about a book, I found this review on Goodreads by a person named Greg. He writes, As the husband of a woman who developed a high degree of chemical sensitivity, I was really interested in picking up the book to learn more. As others have noted, I was confused at first by the author's idea of taking a road trip with one person suffering from, quote, environmental illness or EI as described in the book, but I gradually figured it out. It was one device the author used to take the reader through a physical journey, the road trip, and historical journey. So I think it really is a historical journey. And historically, Greg writes, it's interesting because the author reviews the development of our industrial chemical and pharmaceutical industries while also looking at the historical development of the medical field relating to chemical pollution and sensitivities.

I want to talk with you about the issue of the psychogenic argument where medical workers and researchers claim, I believe, falsely claim that Multiple Chemical Sensitivity, chemical intolerance, toxicant induced loss of tolerance, or TILT, is a psychological disorder. And, and it's something that Oliver Broudy touches on in the book. I'll just read with you from page 5. Neither the American Medical Association or the Centers for Disease Control and Prevention accorded EI, environmental illness, clinical validity. As for the entire medical establishment was concerned, it was best quasi real. For sensitives, as he calls us, people with MCS, this itself was a constant source of anguish because at the end of the day, their suffering was not considered legit. Laughed at by strangers, dismissed by medical professionals, renounced as I'm sharing this with you and with the hope of inviting your feedback on this, maybe your own experience of being psychologized or told that it is a mental health disorder. I mean, Karen, do you want to talk a little bit of how you experienced this? Think Broudy deals with this argument or this false argument.

[00:13:41] Karen: He was trying to lay out a case that there has been a lot of brushing this off as a psychological issue. He brought up some good points, but he never closed the loop for me. So I found it a little lacking, but he did have some good. He says on page 48, if the debate around EI revealed anything, it was just how much skill and dedication being ignorant required. That was a good point for me, and redeemed him a bit in my eyes. Because he was talking about people putting on the blinkers and maybe sticking with the psychological side of things and not being more open. And that exists in so many areas of chronic illness.

[00:14:31] Aaron Goodman: I would agree with you. I feel like I'm glad that he deals with them, but I don't feel like he's conclusive about it. You know, it's still sort of an open question and I didn't appreciate that part. Donna, would you like to chime in?

[00:14:45] Donna: Yeah. I had mentioned at the beginning that it was very triggering for me. So reading some of that brought that back. So in 2001, my workplace mandated that I have a psychological assessment because they wanted to prove that they weren't responsible in any way. I guess that was it. Or maybe they really believed that. That was 2001. I'd like to think that in 23 years we've come farther, but when I was reading the book, I kept going back to the, what year did he write this? And it was 2020. So that makes me a little sad to think that we're still using those labels. Yeah, I really struggled with some of that throughout the book for sure.

[00:15:22] Aaron Goodman: I know, I hear you. Jacqueline.

[00:15:25] Jacqueline: I haven't had too much blowback from friends, family. People are really, in my life, are very supportive. And my brother had a friend who was going to drive us somewhere. But I said, can I sniff you? He said, sure. So I will ask people if I can smell them before I get in their vehicle, etc. Or smell their vehicle. And I have not had anyone say I was, you know, or anything like that. I tend to be very well spoken and it's hard for people to argue with me when I can come back with information. I, like I said, I was a librarian. I ended up losing my job because of this, but I have a lot of information at my disposal. But, that being said, I have had a couple of offhanded comments when I've said I need another room at a doctor's office, like what's that all about, you know, and they just look at me and my, the most recent one, I was in the hospital, I fell and I got a concussion and I fractured and dislocated my wrist on marble. Anyway, so I was in the ER and I said to him, I'm going to need a new room. A nursing assistant to take my vitals because she reeked of dryer sheets or laundry products, which are my worst trigger, one of my worst triggers. And the nurse said, you don't have to worry about that right now. And I thought, and I think I said something like, well, we worry about it when I throw up on her, which I don't tend to do, but I thought I'd take it up a notch. So that was obviously treating me like it was a psychological illness. She obviously had no interest or investment in finding out what I meant or trying to help or anything. And so I've had those little things along the way, but I will also stand up and say, I'm sick to death, I'm not going to take it anymore. And I do think when you go to a doctor that should be, he didn't say a place of sanctuary, but It was something along those lines. This is what the author said. And I thought, yeah, I should be able to go to a hospital, a doctor's office, and be safe. And that is not happening. At least not in this country.

[00:17:26] Aaron Goodman: I wanted to turn the corner and talk about some of the theories that Oliver Broudy mentions. One that I found particularly helpful was where he writes about Dr. Claudia Miller's research. Dr. Claudia Miller is a professor of environmental and occupational medicine at the University of Texas Health Science Center in San Antonio, Texas. Dr. Miller has been doing work on Multiple Chemical Sensitivity or chemical intolerance for a lot of years, for decades, and we can talk about her theory of TILT, Toxicant Induced Loss of Tolerance. I'll just read a little bit from page 57.

Skeptics who regarded EI as merely the ravings of attention hungry malingerers and EI apologists as their enabler. Miller argued that the real blunder belonged to the skeptic for failing to notice that EI signified a whole new class of illnesses or rather of unexplained disorders including myalgic encephalomyelitis, fibromyalgia, asthma, migraines, even Gulf War illness, all of which her TILT theory could explain.

Broudy notes that Dr. Miller classified a whole new type of illness, including Multiple Chemical Sensitivity as part of a wider pattern. He writes that TILT had much in common with the quote, "rain barrel theory," a vernacular explanation for EI that often cropped up on sensitive-friendly websites. In this view, each individual had their own unique, genetically determined toxicity threshold.

When that threshold was reached, the barrel overflowed and the result was disease. I think it's been a helpful metaphor for me, the rain barrel theory and whether we develop Multiple Chemical Sensitivity or chemical intolerance from a prolonged series of exposures or a large single one, the barrel can overflow.

I find that a helpful metaphor. Rhonda, do you have any thoughts on TILT theory and seeing it in the book, "The Sensitives"?

[00:19:34] Rhonda: It makes perfect sense. I love the way he explained it in the book because he also combined it with the other theories, and that's where we're having the problem as a community. It's a lot of theories with no single strain. But TILT 100 percent makes sense, but the bucket theory also does. And I've lived through two circumstances where the first time it was long and chronic, the second time I had a long and chronic escalation, and then a major change. So there is validity to each of the theories and there's no consensus in the medical community and in my experience, and I'm not just had to stay in the mental hospital after that.

I ended up working in the mental health field. There's a lot there to that is. A lot of people that are being labeled and even forcibly committed is because they're actually having a reaction to, they're in low income housing. Low income housing is a lot of it toxic and it's being disregarded by the government and society as a whole.

[00:20:48] Aaron Goodman: I think so. Karen, do you have thoughts on the theoretical components of the book, "The Sensitives"? TILT theory, or how did you find that part of the book? Helpful, not helpful?

[00:21:00] Karen: For me, it was interesting because I've done a lot of research on my other areas of illness, especially mast cell activation syndrome. And so seeing these other theories and, as you said, all the history behind EI and Multiple Chemical Sensitivity, that was really interesting for me and new. In MCAS, we have the histamine bucket analogy, which is a bit like the rain barrel. So that was familiar to me, and I can relate to that. Dr. Gray, that he interviewed, and he was talking about the mast cell, which, by the way, can be triggered by trauma, I believe surgery, definitely an infection accidents that really resonated with me that you can have this overload when I'm exposed to these kind of triggers I just mentioned, my chemical sensitivity goes off the charts.

[00:22:02] Aaron Goodman: And on mast cell activation, we featured a doctor on the podcast, Dr. Afrin, who theorizes that mast cell is the underlying mechanism behind Multiple Chemical Sensitivity, a hundred percent. Jacqueline?

[00:22:16] Jacqueline: I think that in my case, because I had carbon monoxide poisoning, so I had a massive exposure and I had a few issues before that, but nothing major. And I had a really healthy lifestyle, which maybe kept me healthy, but I certainly can relate to the fact that I was relatively able to tolerate the world at large. One day and within, like I said, a day or two, I noticed that and it included light and noise as well. So I reached my tilting point.

[00:22:48] Aaron Goodman: Thank you. And Donna?

[00:22:49] Donna: Yeah, it just makes sense to me that I grew up in a small town where the ground is full of uranium. We have our uranium mine here. So the environment is probably going to affect us. The EPA came in the seventies and we're like, "Oh, maybe this isn't good for the people that live here." And then I just. Yeah, I feel like even now that there can be, if there's an overload, that's what precipitates a crash. And so staying well is my primary goal. I find that things like mindfulness and things like not pointing to the psychogenic. However, I do feel that when my body is less stressed, I'm able to handle more smells, if that makes sense. So I work really hard at, and I do have really good supports as well. So

[00:23:39] Aaron Goodman: I wanted to talk a little bit about how Oliver Broudy writes about people with MCS and towards the end of the book, as was noted, he and his travel companion end up in Arizona and Snowflake, Arizona, which is a place where many people with Multiple Chemical Sensitivity or chemical intolerance have moved over the years.

Oliver Broudy writes about his encounter with Scott, who's a longtime resident of Snowflake, Arizona, who happens to have spoken on the podcast with me. There was a fastidious self-awareness to the way Scott told a story. He was always hedging, amending, ending his remark with a little proviso or addendum as to anticipate. It was painful to watch these helpless exertions like a squirming fly in a web. I felt bad for him. I would have liked to tell him that I didn't need to be reassured. Except, that probably wasn't me. Scott was trying to assure so much as himself. For 18 years, he'd been doing this. Struggling to maintain a coherent sense of himself as the disease.

Interactively edged him to the margin. This is far from the worst thing that happens to people. He would say reasonably intelligently. I have a lot to be incredibly thankful for, and I am. It's not the way I saw my life going, but you just make the best of it because what else can you do? Clearly, he had a great stake in believing himself to be this reasonable, intelligent person.

But illness has a way of splitting us from ourselves, exposing the lie, laughing at those parts of us we work so hard to make convincing. Even if Scott ever did manage to fully spread into his fate, that surrender would never be accepted. That was the great cruelty of the disease that had never ended. As I'm reading it, it's rambling. It's not so coherent and clear. I'm not sure what the author is really trying to say, but I'm left with an impression of the author picking up on Scott's questioning himself or having to prove himself. And I guess that if I think about my own experience, of course, that's something when we're so widely dismissed, maybe that does filter into everyday encounters, right?

Sort of this questioning of oneself. But on the other hand, I felt like. It's not a really positive portrayal of Scott, and I found him to be quite confident in his exchanges with me and his communication, paints him as a really weak and insecure person, and I don't know if that's really necessary or helpful or even honest. What are your thoughts on this? Yes, Karen.

[00:26:16] Karen: I feel that in some way he was respectful and didn't push it too far with Scott in questioning his sanity and other things, but I did actually relate to this sort of checking yourself type thing because I do feel that with this People who are outside the chronic illness community, I do tend to do that, and even with doctors or whatever, with some of my friends that I feel that don't really understand the chronic illnesses that I have. So I do do a sort of dumbing down or a little gauging and stuff. So I was thinking that maybe Scott was doing this, especially as it's

[00:26:59] Aaron Goodman: I would be anxious to meeting a journalist coming out of the blue and just talking about one can feel very vulnerable and very exposed because at the end of the day, media has a lot of power. Right? And thankfully, there's some independent media. And now we can just tell it like it is or share our stories in an unfiltered way. Rhonda, would you like to talk a little bit about how the author Oliver Broudy writes about people with MCS, whether it's Scott or others?

[00:27:27] Rhonda: It was so triggering, and in my experience, everyone feels like an enemy because they really don't get it. My husband started believing that this was not real, and this was some kind of mental illness.

[00:27:41] Aaron Goodman: I'm not saying this is your case, but one can have an anxiety reaction or a panic attack. Yeah. That doesn't mean we have a mental illness. It means we can be reacting to a chemical. Thank you very much for sharing, Rhonda.

[00:27:56] Rhonda: It looks or presents as anxiety or panic. Our friends and family are confused because the doctors aren't giving them any answers.

[00:28:05] Donna: He just added to the stigma. Although, he did meet David Reeves. And he said that he identified with him and that's when I felt this, "Oh, so you've changed your opinion a bit based on the fact that you feel like, Oh, this man is not crazy because he's like me."

[00:28:24] Aaron Goodman: Absolutely. As they say, you don't get it till you get it. Jacqueline.

[00:28:29] Jacqueline: I wanted to respond to your original question about Scott talking about his, his, his, his I have to tell you as you were reading it, and it was a few minutes ago, I, I really almost started crying because I realized that I try so hard to be normal and not come across as somebody that I'm, I don't want to be.

I was a very confident person until this happened and it just took the wind out of my sails. And so sometimes I think it's, changed me and I sometimes can't find myself, sense of self anymore. And I really liked myself and now I talk about this so much because I want to be an advocate, that's really one of the main reasons I talk about it to a lot of people, but I just realized that I also am apologizing to myself for being the way I am and not being able to somehow leap over some barrier, even though I realize that I'm going to be like this for the rest of my life.

I don't think there's a cure. I think that avoidance is the only thing that I can do. And that does seem to help. Anyway, when you were reading it out loud, it just hit me like a ton of bricks that I'm trying to be brave and I don't know, it's exhausting.

[00:29:50] Aaron Goodman: Yeah. Thank you so much. Maybe as we aim to wrap up, is there anything that will stay with you from reading the book? Rhonda, would you like to start us off on this round?

[00:30:01] Rhonda: It helped me see other people again as not a threat, as trying to understand. They're confused. They don't know if it's real, but our numbers are growing and there is science happening, and this was a really good experience. Good human story.

[00:30:19] Aaron Goodman: Thank you so much, Donna.

[00:30:22] Donna: I've said, I didn't like the book, but I'm really glad that I read it. And I'm glad that I participated because I don't really consider myself an advocate. And so as I was reading it, it was just the whole going back and forth between. I've done a lot of these things. I've spent the life savings. I've taken thousands of dollars worth of supplements. I've tried anything to feel better.

[00:30:47] Aaron Goodman: Thank you so much.

[00:30:49] Jacqueline: I'm glad I read the book. I think there's a public health issue, and I think it needs to be addressed as such, because we know there are certain groups that use more fragrance than others that are getting sick. We know people who buy new houses and cars. Have reactions that they may not attribute to that, but it's a public health issue and I'm very angry right now about that. And no medical facilities, if they have a fragrance free policy, they do not enforce it. And I wish he would've brought that up. I say, I don't wanna get sick when I go to get healthcare.

[00:31:17] Aaron Goodman: Thank you.

[00:31:19] Karen: I'm glad too that I read the book even though, I wasn't expecting quite to have such a strong negative reaction to it. It again, it's the language and for me, there's some interesting stuff. Definitely in the history, there's some things I've made note of that I want to go and look into in more detail, and some of the research.

I did really like that historical research, the history of chemicals, all those elements. But there's been a wake up. For me, just to be, to be mindful of what I'm doing, because as we said about Scott, maybe I'm hedging things and over explaining and justifying and, and I just want to be more confident and I used to say things like I'm just an alien I react to everything or I'm a weirdo because I have this weird skin thing because I didn't have any explanations for these things but now I'm finding more explanations I know that it's EDS that's causing my weird skin stuff and then I have mass cell reactions and I Multiple Chemical Sensitivity is a thing and there are other people out there so now I have real words to put.

And I am going to be more careful in my own interactions and keep doing advocacy when I can, but making sure that I use language that is respectful and calling people out when they don't.

[00:32:48] Aaron Goodman: Am I right in saying that, just the title of the book, and using a term that people with the illness do not recognize. I don't know anyone who calls the community of people with Multiple Chemical Sensitivity as "The Sensitives." And that's really very odd. Why not use a term that people with the illness actually own?

[00:33:10] Karen: For me, it was the overall use of the word sane and other variations on sanity in every couple of pages. And that really got to me, because why use that language so repetitively? It's just insulting.

[00:33:30] Aaron Goodman: It is insulting, and there are some, I view them as unethical researchers who write about the psychogenic argument and I don't even know if he cited any of them. He just takes this view on his own or it takes like the general the common view and claims it and writes about it. And it doesn't really hold water. Particularly when you contrast that with credible research like Dr. Claudia Miller's and TILT right the TILT argument the two just you can't If you're putting them together, I don't know how you can continue to write about the possibility of it being psychogenic. That seems like a very odd choice.

[00:34:07] Karen: I thought maybe he was trying to present himself as being a neutral in this whole discussion.

[00:34:15] Aaron Goodman: One thing that makes me think of just listening to you, Karen, is I've been teaching journalism for quite a while, and something that I'm often told is journalists don't have to present it as a 50-50 argument, right? If you take climate change, for example, it's like 99.9 percent of credible science experts in the field believe that climate change is caused by human activity. It doesn't mean I'm going to 50 percent of space to the 0.01 percent of the skeptics, right? I can acknowledge that they exist, but I don't put them, I don't stack them together and I feel like that's what Oliver Broudy does a little bit continues to go back to the psychological.

And I just wish you would, as I said earlier, close the door on it and just move on. You don't have to be 50-50. So was it a storytelling device? I'm not sure, but I didn't appreciate how he writes about people like Scott, who takes a lot of courage to, to invite a journalist to come and talk with you. It's been really, really amazing talking with you.

You've been all, generous for your time leading up to this. You did phenomenal work looking at this rarely in depth. So I'm really grateful to you. Thank you so much. 

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