The Chemical Sensitivity Podcast
Thank you for listening to the Chemical Sensitivity Podcast!
Amplifying voices of people with Multiple Chemical Sensitivity (MCS) and research about the illness.
Brought to you by journalist and communication studies researcher, Aaron Goodman, Ph.D.
Generously supported by the Marilyn Brachman Hoffman Foundation.
DISCLAIMER: THIS PROJECT DOES NOT PROVIDE MEDICAL ADVICE
The information, including but not limited to, text, graphics, images, and other material from this project are for informational purposes only. None of the material is intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health care provider with any questions you may have regarding a medical condition or treatment and before undertaking a new health care regimen, and never disregard professional medical advice or delay in seeking it because of something you have heard or read from this project.
The Chemical Sensitivity Podcast
Chemical Crisis — Memoirs & MCS: Roxana Delbene, PhD
You’re listening to The Chemical Sensitivity Podcast. I’m Aaron Goodman.
In this episode, we discuss illness memoirs as evidence, resistance, and survival. We explore the seminal 1994 memoir by Australian writer, Diana Crumpler, Chemical Crisis: One Woman's Story, Humanity's Future?
I speak with Roxana Delbene, PhD, a linguist and medical humanities scholar who studies how people with so-called contested illnesses, including Multiple Chemical Sensitivity (MCS), use language and storytelling to tell their personal stories of lived experience.
Exciting news! Check out the podcast's new webpage: http://listen.chemicalsensitivitypodcast.org/
Watch on YouTube:
https://youtu.be/mZwUxbYKTOg
Get in touch:
aaron@chemicalsensitivitypodcast.org
Link to Roxana's recent essay on illness memoirs:
https://medicalhealthhumanities.com/2024/10/23/the-patients-productive-imagination-the-reportability-paradox-in-narratives-of-contested-illnesses/
Apologies for some subtle clicking sounds in this interview.
#MultipleChemicalSensitivity #MCS #MCSAdvocacy #InvisibleIllnessAwareness #SafeHealthcareSpaces #ChemicalIntolerance #EnvironmentalDisability
Thank you very much to the Marilyn Brachman Hoffman Foundation generously supporting the podcast!
If you find the podcast helpful, please consider becoming a supporter!
https://buymeacoffee.com/mcspodcast
Follow the podcast on YouTube! Captions available in any language.
Please follow the podcast on social media:
Facebook
X
Instagram
BlueSky
TikTok
[00:00:00] Aaron Goodman: As we know, a lot of people with multiple chemical sensitivity MCS share parts of their lives online. On social media. We share short posts about reactions, about grief, about trying to navigate environments that make us sick. Small windows into real complex experiences. Some people share little, some share a lot, and all of it matters.
[00:00:29] But it raises an interesting question. What if alongside these everyday posts, more in-depth personal narratives about MCS also existed. There already are some memoirs about MCS, but I think there's room for many more. Not as an expectation, just as a possibility because for conditions that are often doubted longer form storytelling can become another way of making lived experience visible.
[00:01:01] You're listening to The Chemical Sensitivity Podcast. I'm Aaron Goodman. This episode I'm joined by Roxanna Delbene, PhD, a linguist and medical humanities scholar. Whose work explores how people with so-called contested illnesses use language and narrative to be believed. Roxanna studies, illness narratives, and how patients construct credibility when their symptoms are real life altering and often dismissed.
[00:01:33] We talk about why memoirs can function as both documentation and resistance, and how they can help inform others living with chronic illness like MCS. For this conversation, I asked Roxanna about her assessment. A 1994 memoir by Australian writer, Diana Crumpler, Chemical Crisis One Woman's Story, Humanity's Future.
[00:01:59] In the book, Crumpler recounts the onset of severe physical, neurological, and sensory disturbances. Her decision to retreat to the countryside in Victoria, Australia in search of safety. The devastating pesticide exposure that followed alongside the physical suffering. Crumpler describes repeated medical dismissal, a pattern that deepened her isolation and underscores the book's central message that MCS as we know is widespread.
[00:02:33] Poorly recognized and woven into the fabric of modern life. Some exciting news. Please check out and share a link for the podcast new webpage. Listen.chemicalsensitivitypodcast.org. It's easy to share with any MCS skeptics in your life, your doctor, employer, even family and friends. Listen dot chemical sensitivity podcast.org and please subscribe to the podcast wherever you get your podcasts.
[00:03:00] To learn more, follow The Chemical Sensitivity Podcast on YouTube, Facebook X, Instagram, blue Sky, and TikTok. And you can reach me by email at Aaron. At chemicalsensitivitypodcast.org. Thanks for listening. Hi Roxanna. Thanks so much for joining me.
[00:03:20] Roxana Delbene: Thank you for having me.
[00:03:22] Aaron Goodman: Yeah, it's really wonderful to be speaking with you.
[00:03:25] Would you like to briefly introduce yourself to, to folks?
[00:03:30] Roxana Delbene: Yes, sure. Um, I am a linguist by training and, um, because of my dissertation in linguistics. In which I studied the interactions between, uh, doctors and patients with hiv aids in a South American country, in in a public hospital. I became very interested in their narratives and um, and in, uh, a new field that I learned many years later, uh, was medical humanities and narrative medicine.
[00:04:10] And that is how I later completed another, um, an MS in narrative medicine and then, uh, a doctorate degree in medical humanities, trying to combine both the linguistic aspects, dis course aspects and the medical humanities aspects.
[00:04:31] Aaron Goodman: And in your work, in your dissertation, you're looking at a particular kind of memoir.
[00:04:38] Yes. Um, in my dissertation for medical humanities, which I completed at Drew University in New Jersey, I studied different, uh, memoirs, but I focus on memoirs of, um, people who experience what is called, uh, congestive illnesses. And one of the first memoirs I studied and, and discovered was Chemical Crisis by Diane Rumble.
[00:05:14] And from there, I, I went to other memoirs, um, in which their authors, uh, presented similar symptoms such as chronic fatigue syndrome and chronic Lyme disease and fibromyalgia and others. It happened to me that I had a very close friend who suffered from. Lyme and her symptoms started in the eighties and she was telling me her experience of not being believed, uh, that her symptoms were real.
[00:05:54] So that was one of the reasons that let me to start reading and, and then discover all these memoirs in which people a commonality. Of these memoirs, although they presented different conditions, was they, that they were not believed. Mm-hmm. So instead of, instead of focusing on, on why they're not believed, which I did in part my, my point, was to try to see how they constructed credibility. How, how they made their stories. Mm-hmm. That was my, my topic.
[00:06:37] Aaron Goodman: Mm-hmm. Yes, very. It's fascinating and you dedicate your research, if I'm not mistaken, to your former roommate who had Lyme and maybe another who had chronic fatigue syndrome, who's no longer alive. Is that right?
[00:06:55] Roxana Delbene: Yes. I, I dedicated to my dear friend Georgia, and also to other people who it happened.
[00:07:05] It's this amazing coincidence. When I was, uh, at University of Pittsburgh and, uh, completing my dissertation in linguistics, it happened that I was living in a building apartment in which. Uh, two, um, different neighbors. Um, they were women in their, I would say early forties, but at that time, uh, they were suffering from chronic fatigue syndrome, which I, I didn't know what it was at the time.
[00:07:42] But I was curious enough to, one of them to, to ask them if I could interview her for, for one of my papers in a course, uh, in this course analysis. So that is how I started, uh, getting interested and, and then I connected Many years later, I connected with Lime. And the other, uh, memoirs that I was reading.
[00:08:21] Aaron Goodman: So those must have been very profound connections you had with those two particular women. Before we jump into and talk more about, uh, the memoir on MCS called Chemical Crisis One Woman's. Story, Humanity's Future, as you mentioned by Diana Crumpler.
[00:08:41] Mm-hmm. Published in 1994. Yes. Um, I want to ask you more broadly, you know, um, often on this podcast, uh, I speak with toxicologists and environmental, uh, physicians and people with lived experience. Um, what does, um, your work bring to the discussion? You know, what, what value does it have? I see enormous value in it, but, uh, for people who may not be familiar with it, why, why is this work important?
[00:09:14] Roxana Delbene: Yes, that is a very question. Well, I will say that the value is, um, in, in the focus on. Narratives. Um, because if you think about what a narrative is, so a narrative is in itself, a narrative exists because there has been a deviation from what is considered normal. Um, if everything will be perfect, we wouldn't have the need to say, to tell, uh, a narrative or to write a narrative.
[00:10:00] So narratives are, um, very powerful because they allow the person to, to make a plot. And the plot is a way of. Putting together things that seem contingent and dissimilar. So making a narrative is making a whole and a whole put everything together. And by doing that, um, you are, uh, rewriting or rethinking.
[00:10:41] And constructing your experience and you making sense of it.
[00:10:49] Uh, I would say that in, in writing these memoirs, um, what all these, uh, different authors and patients have done is to put together and make sense of their experiences, which many deny that that sense to them. And, um, and they, they are claiming their own perspective. But they are also, uh, reaching out to others, to their fellow sufferers, to their fellow, um, uh, sufferers in chemical sensitivity or with chronic fatigue syndrome, et cetera.
[00:11:34] And they are building a community in which they can validate each other and support each other. And also memoirs. Um. An argumentative, um, they, they are claiming an argument as well. It's not just that a person might tell their stories, but also they are making an argument. So they have a, um. Uh, one of the points is to, is to claim credibility for what I was able to, to study.
[00:12:13] Hmm. So, so I will say that that is one of the, uh, importance of, of, uh, studying these memoirs and it could be a great deal of help reading, um. For, for fellow sufferers, uh, or for people who are experiencing these contested conditions, it's very, um, helpful and therapeutic to read and also to write their own stories.
[00:12:44] Aaron Goodman: There are some memoirs focused on multiple chemical sensitivity. Not that many though. And so it's interesting to hear that you first came across Diana Rumple's book published in 1994, which is some time ago.
[00:13:01] Roxana Delbene: Yes. Um. I think that I came to, I discover her memoir because when you start exploring the term contested illness, what comes immediately is the association with the wolf, uh, the gulf, uh, war, illness, um, and, um.
[00:13:29] And, and that probably, I, I read about it and I, I am, most likely I found, uh, that her book was cited. So I went and, and I got the book. Um, regarding Diana Crumple, you can see that she was living in Victoria, Australia. Uh, she must be now in her late seventies. It's a very comprehensive book. And I really admire her, her work.
[00:14:03] So as many illness narratives, um, of this sort, uh, they start with, uh, the description of symptoms, uh, the description of confusion of what is going on. Mm-hmm. And, and that is, uh, getting sick, her family members getting sick. But that would be the. The complicating event, let's say, in, in narrative terms. And then, um, the journey goes into trying to discover what makes her sick and mm-hmm.
[00:14:45] And also what makes her husband sick and, and her children sick as well. And the voc in Arise. The process in that journey in which she discovers that what happens to her is not a psychosomatic illness, um, as many doctors tell her. Um, but she discovers very slowly and over the years, um, that what she's experiencing is a reaction against the pesticides.
[00:15:28] They, um, they were living in a farm. And she describes the amount of pesticides and um, uh, and the fumigation that was periodically in that area.
[00:15:43] Aaron Goodman: Mm-hmm. And not necessarily on her farm, but, but, um, come from airplanes and likely properties around there where they lived.
[00:15:53] Roxana Delbene: Yes. And also, um, she tells about a neighbor who was, um, burning plastic.
[00:16:04] Mm. And, uh, and when, and, and the resistance she and her husband experienced, uh, from neighbors at first, from the community at first. Um. And, and that nobody was connecting that was making them sick, was all the amount of pesticides, um, in the farm. So very slowly she started making that connection. And the, uh, storytellers, how she start, um, getting, uh, treatment for it.
[00:16:43] And, and the end as typically in of this illness and narratives, you don't only have the story about what happened to her, so the narrative aspect. You also, you will also find chapters in which she explains about. Why there is resistance from the medical community. And she, there are also chapters about the, um, the chemicals and the danger of chemicals that they were used in her area.
[00:17:26] Mm-hmm. Um, as well as, as, uh, resources. So many of these, um, and that is what actually gives a great deal of credibility to these memoirs.
[00:17:39] Mm-hmm.
[00:17:39] Because it's not just the subjective. Point of view. Mm-hmm. But they provide a great deal of, uh, information and documentation, um, by making reference to. Uh, scientific studies to history, like history of medicine as well.
[00:18:01] Aaron Goodman: There's a lot of research that goes into that and, and I was surprised how relevant it still is today. You know, not only her experience, um, being dismissed. By healthcare providers, by physicians, but also the, um, efforts by industry to minimize the harms that pesticides costs, which still goes on.
[00:18:26] Roxana Delbene: So one of, of the purposes of her book is actually to raise awareness about mm-hmm. The danger of the pesticide mm-hmm. Uh, in our health. Like she, she acknowledges that she was not that aware at the time, um, before she started experiencing those symptoms, but certainly, um, she became an advocate. And, and if you, once I read myself the book, I also become much more aware of it.
[00:19:03] Aaron Goodman: She writes her body stopped tolerating modern life. And to me it doesn't sound that surprising given the amount of pesticides they were exposed to. And we know that pesticide is a common trigger for people with MCS, and yet she was seen as an outlier by doctors and industry and systems. And that's what strikes me as strange. You know, it's not that surprising that she got ill. Why is that so surprising to anyone?
[00:19:39] Roxana Delbene: Well, yes. Um, well, the thing is that, uh, this, this what happened to her. Was in the seventies. Okay. That started happening in the seventies, early seventies. The book was published as you said in 1994. Um, so toward the end I think that she, uh, received some recommendation and she was treated, um, by doctors.
[00:20:10] But she says that one of her doctors, uh, gave her the diagnosis of environmental illness. And that diagnosis was, um, uh, a nonconventional diagnosis. Um, I, she does not clarify what year she received that diagnosis, but, um, so we have to consider the, uh, the timeframe, um, and also. Yes, there was not that much awareness in medicine, uh, of the effect of, um, uh, chemicals in, in, in the, in person's health.
[00:20:54] Mm-hmm. In spite of, of the publication of Silent Spring by Rachel Carson, doctors were doing, uh, many tests on her. It is not that they just said it was all in your head, and then they did not explore. In her case, yes, they did many tests, but, uh, and, and that happened with the other memoirs. In the case of, um, I would like to mention.
[00:21:25] Um, the widening circle by polymoride, which is also an amazing story of the discovery of Lyme disease in which the doctors did many tests. Mm-hmm. There are, um, she was receiving conventional diagnosis and, and like crumple, she was receiving some conventional diagnosis, and, but they were, the treatments were not effective, so at the end when the treatments were not effective.
[00:22:04] Then that is started when, uh, you are very stressed out and the psychogenetic explanations.
[00:22:12] Mm-hmm.
[00:22:13] But the fact that we need to be clear that the fact that sometimes organic evidence is not found, that doesn't mean that the person does not have a condition that has an organic, um, biomarker.
[00:22:33] Aaron Goodman: That's right. Mm-hmm. And that's what I found that a lot of, um, what, uh, Diana Crumpler describes about the mislead and the psychological psychologizing still happens today because as we know, it's can't get a biomarker test easily.
[00:22:50] Roxana Delbene: Yeah. That's, that, that, that's true. But I think, I think things are changing.
[00:22:58] I think that. Uh, you, you asked me about the, the importance of, of analyzing the memoirs Well, and I will say that, um, memoirs are also contributing to raising awareness. Mm-hmm. And as much awareness we can raise then, uh, more and more, um, uh, public pressure. Has an impact on the way diseases are, uh, whether they are being, uh, dedicated research to them, whether they, they are receiving the codes that are needed for, for insurance, for doctors to feel comfortable being able to do a diagnosis.
[00:23:53] So, um, memoirs are part of these. Popular discourse that is transforming things. And Crumpler says that in the future, um, treating, uh, multi chemical sensitivity as a psychogenic condition will be like treating, uh, the, the blood letting that, uh, doctors used to do in 18th century. Mm-hmm. Um, so it will be seen as a very.
[00:24:27] How they, um, treat them. But it's still, there is a need for more investigation and more, more research.
[00:24:38] Aaron Goodman: And, and I, I wanted to ask you a little bit later, but since we're on the topic, you know, a lot of people with MCS maybe listeners may be interested in, some are already or have written memoirs, uh, but for those who, um, you know, aren't writing or don't to write full.
[00:24:56] Books, you know, is there value in sharing one's phrase, uh, of illness on social media?
[00:25:05] Roxana Delbene: Well, um, I, I have not had that experience, but I will, uh, say that yes, um, uh, more and more people are turning to social media to, to share about their experiences with different conditions. And, um, I have not studied those.
[00:25:32] Mm-hmm. Uh, I have not studied those communications, so I cannot say more. Mm-hmm. But, um, I studied the written memoirs. Mm-hmm. Um, but I can say that. There is evidence, um, that since the 1980s, uh, with the HIV/AIDS epidemic mm-hmm. Um, what was called, um, and the narrative womb that, um, it started in the seventies and.
[00:26:04] Uh, further developed with the HIV/AIDS epidemic was that the publication of the memoirs of its stories has had an impact on medicine, uh, to the point that, uh, we have now a new field that is called, uh, narrative medicine and, and. Memoirs are being studied. Illness, memoirs are being studied in, in, at universities.
[00:26:37] Mm-hmm. So I, I teach, uh, these, these memoirs to my students in, in medical humanities. And the fact that they're being taught. Um, and not necessarily, I have to say that Crumpler was not a professional writer. Um, she was a librarian. Um, and I think that certainly contributed to, to the enormous amount of research that she has done for her book.
[00:27:09] But, uh, only few. I would say the majority are, um, citizens, that they have an educational level of education, but they are not professional writers. Mm-hmm. Um, and, um, so they, they, um, they have transform also, um. What is considered literature, because these illness narratives are considered part of the literature.
[00:28:02] Aaron Goodman: So are you suggesting that people don't need to be professional writers to write a memoir on illness?
[00:28:09] Roxana Delbene: You don't need to have a degree in creative writing or be a librarian. Is that what, is that what I'm hearing you say?
[00:28:15] Yes, I, I will like to say that you don't have to have a degree in creative writing. Mm. Although having a degree in creative writing, writing may help you. Mm. All of these, uh, or the majority of these, uh, narratives, they show a great deal of preparation, a great deal of research and investigation.
[00:28:41] Mm-hmm. So, um, to be effective and to be credible and to be able to. Um, connect your argument. Um, most of these memoirs, although know, know by professional writers, they, however, show a great deal of, um, of review and. Preparation.
[00:29:08] Aaron Goodman: What drew me the most in Diana Crumpler’s book was the parts where she explores her personal and her family's personal experience.
[00:29:19] I found the research important, but maybe it was at the time there wasn't that much available, so she wanted to combine the personal with the research, whereas today, we can find that research. In scholarly papers, which are available to everyone, not all, but they're not always available to everyone, but a lot are.
[00:29:41] So what I think, um, in summary, I would like to see more of the personal, less research because I think there's something really profound and just sharing one's lived experience. I wonder if you have any thoughts on, on that, on just the, the power of the lived experience.
[00:30:01] Roxana Delbene: Well, but, eh, I would say that she does that because there is an, an interplay, an intermingling mm-hmm.
[00:30:11] Of the personal subjective narrative with the, uh, with the informative. Mm-hmm. One of the, um, I will say one of the strategies that is, uh, I think a very good strategy is that. All the, um, scientific background that she presents, she connects this. She connects it with her personal experience and her family's experience.
[00:30:40] So by reading her book, uh, and all others, uh, in memoirs, the they are so appealing because you are not reading just the dry scientific position, but. It is the, um, scientific exposition comes connected to with a purpose. It comes to illustrate and to support her personal experience. So that is my, my way of reading it, perhaps
[00:31:16] Aaron Goodman: A hundred percent.
[00:31:17] I like how you framed that, the interplay and mm-hmm. And the connection. Absolutely. And I wanted to ask you, you know, oftentimes even the, the name. There are many names for this illness, but one of the most common is multiple chemical sensitivity. And a lot of people take you with that because we know it's a lot more than being sensitive.
[00:31:40] And for you, when you read Crumpler book, do you have a sense that Crumpler communicates MCS as a disability more than just a sensitivity?
[00:31:55] Roxana Delbene: Um, well, very interesting question. I would say that she mostly uses the words environmental illnesses and ecological illnesses and, um. What, in terms of a disability, I would say that she does not construct herself as a disabled person at all.
[00:32:25] Mm-hmm. Um, although she tells us that. She, uh, has to leave, uh, in isolation practically with her husband. But they had to, to build a, um, they had to accommodate a great deal, their, their house. Mm-hmm. Uh, for her not to be exposed to external, um, chemicals from the street, for instance. But you can see in reading her book, there is a vibrant person who has actually found purpose in, in writing and in helping others.
[00:33:07] Mm-hmm. And being involved, uh, with the community. And now with the advances adv Yeah, advances of, of Zoom and, and um, you know, the telecommunications, I think that she, she may be doing that more, more and more so. I don't think she constructs herself as, as disabled, but she warns about the, um, the challenges and the risks of disability to the whole humanity if, uh, chemicals are not being controlled and, uh, people are not being educated about the damage of chemicals.
[00:33:58] Aaron Goodman: Yes. And if doctors and perhaps regulators and policymakers were to read this book, what do you think they, they would take away? What do you think they would learn about MCS?
[00:34:14] Roxana Delbene: Well, two things come to mind right now, first of all, and one of the scenes that. Raise my awareness when I read her book a few years ago for the first time was her, uh, awareness in, in the fact that we are not separate from nature. Um, that what kills an what kills a mosquito is the aunt, the mosquito, the grass.
[00:34:50] Are not that separate from us. So what affects them? They may affect us in the long run if it's not immediately. So we are not separate from nature. We are part of it. And what kills other, um, animals and plants in nature may affect us as well. Mm. And that is one thing. And the other thing that I think I, I'm not a medical doctor, but I, I, I can see that it could have an impact, is that, uh, crumble advocates for medical imagination and for, um, the power of observation.
[00:35:44] She emphasized the importance of. Paying attention to, to what not nature is telling us. And certainly the, the combination of, uh, what the patient is saying to what the doctor can find, so that both are, both perspectives are not separate, but they need to be reconciled because the patient. Also has a great deal of knowledge.
[00:36:19] Knowledge about their bodies. So the patient's knowledge about their bodies need to be reconciled with. The, uh, doctor's knowledge,
[00:36:33] Aaron Goodman: When we think of the medical dismissal that Crumpler experienced, how do you view that? Do you, do you think it added layers of suffering for her and her family on top of the illness, and then was writing the memoir sort of an effort to, to claim her voice, to push back against that?
[00:36:52] Roxana Delbene: Yes, that, uh, brought her a great deal of suffering, um, but at the same time brought, uh, a great deal of eh, self-determination. I'm going, I'm going to find out what, what is this about? What is happening? Um, and there is a period, um, for for many sufferers of congestive illnesses. Uh, and crumble experience that as well, that they self-doubt.
[00:37:29] Um, because, and, and that I observe in, in all the memoirs I have studied in with different conditions, like a chronic Lyme for instance, or multi, um, eh, chronic fatigue syndrome. There is a period of self doubt because when. Doctors are saying, I cannot find any, anything organic, and that must be stress.
[00:37:55] That must be all in your head. Then there is a period of self doubt that they say, well, this can happen. Yes. How come And there is a, with this self uhub, there is a period of depression as planned. So yes, it, it causes a great deal of. Suffering. But at the same time, she was seen that not only herself was her children, was her husband, and also later the neighbors in, in that rural area in which they were living.
[00:38:31] So, um, her attitude was of strength and trying to find out what was going on.
[00:38:40] Aaron Goodman: That self-doubt is something that I've heard others, um, talk about, and I sometimes experience that myself. You know, how could it be that I'm reacting so severely to one breath of fragrance when everyone else in the space seems to be fine?
[00:39:01] How could I be, you know, disabled for days by this, you know, it seems. It's, it's hard to understand, you know? Uh, but it is real. It is real. Yes. And often when I don't have a reaction for days, I can fool myself into thinking that I don't have MCS, but it only takes another reaction to remind myself, oh, yes, I still do.
[00:39:32] Roxana Delbene: When about what you describe of your experience, that sometimes you don't, you don't have a reaction for some days, so that makes you believe that. Well, it is in your head that you won't have a reaction. Um, but she says, and, and you wonder how can you be so different that you are. There are perhaps other people in the same room where you are and others don't, uh, have that sensitivity, but you do.
[00:40:11] Um, and one of the comparisons that crumble says is that if we all will be allergic to eating apples, then it will not be a problem. Um, but she says, uh, our bodies do not respond in that manner. So for some, even though it's so es strange, for some eating apples could trigger allergic or sensitive, uh, reactions.
[00:40:51] And yes, it's strange because. We are, um, uh, used to consider that we had to live in this, uh, normality baseline, you know? Um, and if we move far away from that medium, from, from that media, from that mean, um, then, um. Something is strange with us. Mm-hmm. But if you consider it as well, that is the way, that is your makeup, that is the way you are.
[00:41:32] Aaron Goodman: Mm-hmm. And you have to accept it, um, and respect your, listen to your body mm-hmm. And respect your body. Yes, it is. Um, it is not fun. Uh, I believe, but, and that makes you feel single out. But you have to consider that everybody is, uh, different. Um,
[00:41:57] Roxana Delbene: Yeah, everyone's different, but, but
[00:41:58] medicine treats everybody as the same because there is some part of it can be underst, it can be understood that medicine has to consider. Um, has to consider the mean. Mm-hmm. And because we need a point of con
[00:42:17] Aaron Goodman: We know there are millions of people with MCS, so we are no longer outliers. You know, we're not a majority yet, but we're not, we're not alone.
[00:42:28] And I think when we are singled out by others or judged, sometimes I feel like what if they knew? Everyone's trajectory is different and they just, because they didn't have the same as mine, you know, I think that's where they don't understand. They just assume everyone had the same experiences, but they don't.
[00:42:48] Roxana Delbene: Right. Exactly, and I want to to, if you don't mind, I would like to point out something about the term sensitivity, because sensitivity, my concern with the term multi chemical sensitivity is that sensitivity could be constructed as a negative connotation, but actually sensitivity. Should have, in my view, a good connotation.
[00:43:19] Um, because, and, and this is something actually, um, there is another illness memoir that I recommend. It's not about multi chemical sensitivity, it's about other conditions. It is from Sarah Ramey, the Lady's Handbook for her mysterious illness. Mm-hmm. And. She, uh, claims the concept of sensitivity as a good thing because someone has to call.
[00:43:52] Attention to the problems and, and people now who experience multi chemical sensitivity, they are the canneries in the mind. Yeah. So they, they are the, they are telling us that if this is happening to me now, it may happen to you in the future. So, um. They, they are warning us, yes.
[00:44:19] Aaron Goodman: You've been listening to The Chemical Sensitivity Podcast.
[00:44:22] I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for 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 chemical sensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS.
[00:44:47] So exciting news, as I mentioned off the top, please check out and share a link for the podcast's new webpage, listen.chemicalsensitivitypodcast. org. To learn more about the Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, Instagram, blue Sky, and TikTok. And as always, you can reach me at aaron@chemicalsensitivitypodcast.org.
[00:45:13] Thanks for listening. The Chemical Sensitivity Podcast and associated website are the work of Aaron Goodman made possible with funds from the Marilyn Bachman 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 its sponsors.