The Chemical Sensitivity Podcast
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Amplifying voices of people with Multiple Chemical Sensitivity (MCS) and research about the illness.
Founded and hosted by Aaron Goodman, Ph.D.
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The Chemical Sensitivity Podcast
MCS & the Medical System: Tarryn Phillips, Ph.D.
Episode 58 of The Chemical Sensitivity Podcast is available now!
It's called “MCS & the Medical System.”
It features a conversation with Tarryn Phillips, Ph.D.
Tarryn is a medical anthropologist and associate professor in Crime, Justice and Legal Studies in the Department of Social Inquiry at La Trobe University in Melbourne, Australia.
I'm really excited to share this episode with you, because Tarryn is one of the most knowledgeable people I've spoken with on the podcast about MCS.
You’ll hear Tarryn share why so many doctors fail to assist people with MCS, how other so-called "contested illnesses" are now widely accepted by medical professionals, how the medical system needs to change, and more.
Thank you for listening!
#MCSAwareness #MCS #MultipleChemicalSensitivity #TILT
Links:
Tarryn Phillips, Ph.D.
2023 paper:
The doctor, the lawyer and the journalist: Neoliberal career changes and professional resistance during a mining boom
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Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as chemical intolerance and Toxicant Induced Loss of Tolerance or TILT.
The illness affects millions around the world and the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, and more.
Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticides, paint, construction materials, cigarette smoke, and more can spark a cascade of debilitating symptoms. Finding accommodation can be very complicated. 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 in communities are pushing back against it and the harms it causes.
In this episode, I'm speaking with Tarryn Phillips. Tarryn is a medical anthropologist, writer, and associate professor in crime, justice, and legal studies in the Department of Social Inquiry at La Trobe University in Melbourne, Australia. Tarryn has been deeply exploring MCS and how the medical and legal profession respond to people with the illness, leaving many people feeling dismissed, misunderstood, and unsupported.
Tarryn's 2015 book titled "Law, Environmental Illness, and Medical Uncertainty" is a fascinating read. You'll hear Tarryn and I discuss why so many doctors fail to truly assist people with MCS, other so-called contested illnesses that are now widely accepted by medical professionals, how the medical system needs to change, and more.
Aaron Goodman: Tarryn, thank you so much for taking time to speak with me on the podcast. I'm really looking forward to this.
[00:02:57] Tarryn: Thanks for having me, Aaron. It's nice to be here.
[00:02:59] Aaron Goodman: Would you like to talk a little bit about your first experiences learning about MCS?
[00:03:06] Tarryn: Yeah, so I grew up in a small town in Western Australia. And I did some casual work at a small law firm that specialized in representing people with chemical injuries.
And the lawyer there, Jeff Carlson, had a reputation for fighting for chemically injured workers, often against big multinational corporations. Through that, I started reading some of the documents that I was filing and I began to become quite interested in these battles. And so during my anthropology degree, I became really interested in medical anthropology.
I thought that would be a really interesting kind of entry point to look at how chemical injuries are treated by medicine, but also the law and more broadly by science society.
I think that at a conceptual level, I was really interested in moments of medical uncertainty, when there's a lack of consensus over something related to sickness and healing. And when humans feel existentially unsettled, they'll often try to convert those moments of uncertainty into more comforting states of order and resolution and control.
I was really interested at a societal level about how Multiple Chemical Sensitivity represented uncertainty, not just for the people who were suffering from it, but also from various different cultural context about how to grapple with this contested or uncertain condition and what to do about it.
[00:05:00] Aaron Goodman: One of the questions that I have, and it's something that you write about, you know, the situation when it comes to MCS globally, and particularly in the Global South and so-called developing countries, MCS is often less well known than it is in North America, for example, Canada, U.S. and Western Europe. Talk about the perils that people with MCS face globally when trying to access healthcare.
[00:05:25] Tarryn: Yes, there were broad global patterns about the barriers that people with MCS faced in having their claims recognized as being, for example, workplace related or related to chemicals. As opposed to what many medical skeptics would say was psychosomatic or manifestation of paranoia about chemicals, there would be a real challenge for people globally to have their claims recognized as legitimate, to be able to seek compensation in a court of law, to even have the belief of friends and family and the kind of ongoing support of friends and family was a challenge that played out in very similar ways, in lots of different locations across the globe, but there were some interesting differences.
For example, I think Steve Kroll-Smith and Hugh Floyd, I don't know whether you've had them on the show, but they wrote a really seminal work that I drew on a lot in my work, which looked a little bit at the ways in which some jurisdictions in the U.S. were a bit friendlier towards chemical sensitivity than others.
And this related to some extent to being able to frame chemical sensitivity as a disability. So if you're trying to prove chemical sensitivity is causally related to chemicals, especially in common law, then that requires you to prove an exact chemical cause that exact physiological response in that exact way.
And so that kind of threshold of proof is much harder than being able to prove that you have debilitating disability, which requires accommodations and the same requirement for causality and the same kind of getting over a hurdle of scientific muddiness.
I think you raise a really important question about the Global North and the Global South. I remember when I would talk to skeptical experts, there was a kind of stereotype or assumption that given there is much more evidence of chemically sensitive communities in the Global North that it doesn't exist because it's we're not hearing about it at all from the Global South and therefore it relates to upper middle class privilege or there was this skepticism would rely on that as a form of evidence.
But I think what became really clear in my research is that even though people in the Global North might have more capacity to engage in visible environmental health movements and advocate for their needs more vocally and more effectively, there are definitely chemical injuries and chemical sensitivities going on in the Global South.
And perhaps there's evidence to suggest that there'd be even more exposure to toxic chemicals in the Global South, given there is often a movement of industry to the Global South, the more multinational corporations see the Global South as a kind of market with cheaper labor and lower safety regulations. And so on.
There's a kind of broader trend of environmental racism where there's heightened exposure to environmental risks in the Global South. So I think just the fact that we don't hear about it actually doesn't tell us anything about the rates or prevalence. We see an imbalance in which victims are able to have their voices heard and are able to articulate their voices, for example, in English or in those more prominent places, and so I think there's a lot more work to be done in understanding how chemical sensitivity plays out and chemical injuries generally play out in the Global South.
[00:09:47] Aaron Goodman: I think it's fair to say that MCS is maybe even worse in so-called developing countries. So we're going to keep trying to find researchers and talk with people around the world because I think it's really important to shine a light on it.
Would you like to talk a little bit about this dynamic that we come up against when we go to get medical support? I think we all have had that experience where we can talk about our lived reality and we're just not heard and we're just not believed. You also write patients' knowledge is not seen as valid as the doctors' clinical gaze, which has an attached aura of truth and objectivity. And then when we're denied being in the sick role, as you say, it means we are denied secondary gains that can lead to more rejection and dismissal by friends and family. And of course, in the workplace, in school, we need the doctors to sign the forms to get the accommodations we need. So it's a real chain, isn't it? And it really so much relies on having a doctor who's willing to go to bat for us and to just believe that this is really happening, this is debilitating.
[00:11:06] Tarryn: Yeah, that's so true. And that kind of notion of the clinical gaze and the idea that what the doctor sees is the truth and then the patient's perspective is often seen as subjective, as potentially biased, and as supplementary or even inferior to the doctor's objective understanding of what's going on. And then historically that's very much been reinforced by the development of medical technologies. And so a lot of the skeptical doctors that I spoke to, for example, would really back their technologies.
So they go, we have these amazing technologies that can identify toxigenic pathologies to the level of the, I don't even have the language for what they said, the microbe or the biome or whatever, and they just, they glorified these technologies as if these technologies aren't showing up a physiological reason for these chemical sensitivities complaints, then those complaints aren't real.
Whereas the sympathetic experts that I spoke to were like, maybe the technology's wrong, or maybe we don't have enough knowledge to be able to input into the technology such that we understand how chemical sensitivity is working on the body or how these chemicals are making their way into the body and so on.
So there was a really fascinating difference between doctors who were prepared to say medicine doesn't know versus doctors who were like, medicine knows and therefore the patient is wrong if I can't see it or I can't show it in my medical technologies. And I think that's also socialized into doctors through medical training that they're very much taught to make decisions quickly based on evidence-based knowledge and their technologies. And so it's really beaten out of them not to dwell in the uncertainties and admit a lack of understanding about a particular area.
[00:13:31] Aaron Goodman: And I think you're right. Mostly it comes down to this debate that doesn't seem to end between whether it's a physiological illness in the body caused by harmful toxins in the environment, or whether it's psychogenic. I wonder what you make of that. Do you think doctors resort to mislabeling people as having psychological disorders because they just don't know what MCS really is?
[00:13:59] Tarryn: Yeah, it's really interesting and that debate is not just confined to MCS, but also anything where there isn't a clear understanding of the physiological mechanisms of that physical symptom.
There are lots of examples in recent history and ongoing where there is this debate going on, is it a genuine physical condition related to environmental factors or is it psychosomatic? So I think sometimes we collapse it into a binary such that it's either all in the body or all in the mind.
But in talking to lots of different people about the MCS issue, I was really interested to hear that even of those people who were skeptical of the toxigenic nature of MCS, they would still highlight that there was a bodily dimension to it. And even in those people who said that it was toxigenic and caused by chemicals, they would often say that there was a dialogue between the mind and the body in terms of how the body was reacting to the chemical exposure.
So there was actually more commonality between the perspectives. But what I found really interesting was the way in which legal battles polarize those views such that no one's really entering into dialogue about it. It's rather, never the twain shall meet and the skeptics are pitted against the sympathetic experts and then, there's a lot of missed opportunity for actually talking through some of the, you know, the ways in which the different ideas about causality converge and might help to better understand each other's position and might better move forward with some more therapeutic solutions.
The more you realize that medicine often doesn't know what it's talking about, especially in relation to new risks, the more you realize that the law has often protected the interests of the powerful to the detriment of the truth, and that has played out in many occasions in relation to new medical concerns or public health crises.
So, the more you think critically about medicine and the law, the less you take the current orthodox wisdom as the truth, but rather a set of political and cultural and economic constellation of dynamics that have led to a current status quo, but not necessarily some kind of objective scientific truth.
[00:16:59] Aaron Goodman: One thing you, which I found very interesting that you write about when it comes to the so-called psychogenic argument that some doctors, I believe, claim that it is psychogenic because doctors are falsely diagnosing people. So people believe in it, but it's a bogus condition.
[00:17:20] Tarryn: Yeah. That's a really interesting explanation from some of those doctors, isn't it?
The term for that is iatrogenic, meaning caused by doctors. And that was actually quite a common way that doctors would still be able to highlight that they cared for the people involved. The accusation was that the illness was a kind of upper middle class illness related to doctors profiting from medicalizing an issue that didn't really exist.
[00:17:56] Aaron Goodman: And some people have theorized that people believe they have MCS because they develop sort of a paranoia. What do you make of this argument?
[00:18:08] Tarryn: Yeah, it's a really commonly deployed argument by skeptics in any medical debate over new conditions, when people started first complaining of Repetitive Strain Injury or Overuse Syndrome, this kind of musculoskeletal injury from repetitive work in 1980s Australia, there was this really fascinating debate where it was mostly migrant women who were complaining of this and the skeptics came out with these like racist medico-legal stereotypes, like suggesting these migrant women were unhappy and lonely and sad. And therefore they were manifesting these symptoms. And then it was contagious. There was this idea that there was a kind of contagion of a cultural idea or paranoia about repetitive work.
But sympathetic experts were saying, no, the reason it's mostly migrant women is that those are the people in low-paid repetitive work and that there have just been some technological changes, particularly in typing, which meant that the speed of repetitive work was really heightened in the 80s. And so it was actually that it was migrant women being exposed to that new technology, which led to RSI being more prevalent amongst that demographic. So it wasn't that they were paranoid and that they were particularly prone to being paranoid and psychosomatically generating their own illness. It was actually that they were more exposed to an environmental risk, which then led to them having higher rates of this injury.
And so, yeah, that argument gets recycled a lot about lots of different complaints, including with MCS and then the locus of the paranoia is often seen to be particular films or books that have spread these ideas.
[00:20:23] Aaron Goodman: You've talked about nuclear testing and you write about the chemical accident in India in Bhopal in, I believe, 1984. For the question I want to ask is, is there a history of the chemical industry downplaying or delegitimizing people with MCS?
[00:20:46] Tarryn: Yes, there is. And it's actually really fascinating. Some of the literature that looks at the ways in which chemical companies have shaped scientific debates. And I think there's a great article by Michaels and Monforton, I think if I remember correctly, which is about how chemical defendants in lawsuits manufactured doubt, and part of the reason for that is that the plaintiff has to prove that they were injured by the defendant on the balance of probabilities, and so the onus of proof to exceed the balance of probabilities is on the person who's suffering from a condition. And so they have to do all this work in trying to prove something that is in its scientific infancy that is like complicated and currently doesn't have a consensus in science.
And so the burden of having to prove all of that is on the worker and their legal team. Whereas the defendant just has to go, "No, it didn't. No, we didn't." And so the difference in the amount of work required there is really stark. And what happens then, and not only that, but already we have very disparate levels of power and influence between the plaintiff and the defendant sides because the defendant is often, you know, a multinational corporation with really high-powered legal teams and insurance companies behind them. And so they have a lot of firepower in mounting their case, even before we get into the facts. But then when we get to the facts, and I use facts loosely to highlight that I'm talking about that ensemble of political and economic and cultural dynamics behind knowledge and how it gets understood in a medico-legal setting.
When you get the defendant party, it is in their vested interests to discount any of that new science or unusual science or unproven science. So they have a kind of stake in manufacturing scientific doubt over new issues being brought before the courts and we can see that in claims around asbestos, we can see it in claims around lung cancer.
These were very powerful industries that really saw it upon themselves to shape and constrain the direction of scientific inquiry and how it got arbitrated over in legal settings.
[00:23:51] Aaron Goodman: When it comes to other so-called contested illnesses, there are a number of them, right? I think we could put Lyme disease in that category, Myalgic Encephalomyelitis, ME/CFS. You write about Wind Turbine Syndrome, Gulf War Illness, and I want to put Multiple Sclerosis in this grouping, although it's no longer not recognized, but I believe for a time, there was a lot of skepticism about it, and it wasn't recognized in the same way that it is today. So my question is really, can the medical profession change? Could it be that in hopefully the near distant future, medical professionals will treat us differently and recognize MCS as a physiological illness. What does it take for that process to happen?
[00:24:46] Tarryn: Yeah, that's such a good question. Certainly, again, returning to the RSI, Repetitive Strain Injury or Overuse Syndrome example, there have been incredible steps forward in terms of it being now medically detectable through technological advances.
For workplaces to be compulsorily required to ensure ergonomic working conditions, to prevent against Repetitive Strain Injury, there's a category in the Diagnostic or Statistical Manual and so on. So there have been these key landmarks of legitimation. Importantly though, those official layers of legitimacy don't necessarily translate to better care for people on an everyday basis.
And I think that the kind of stigma or tarnished reputation that is forced upon people whose conditions aren't initially understood lingers for a period of time as well. Yeah, I think there is capacity for the medical profession's knowledge to be deepened and extended on the causes or mechanisms of MCS.
But there are also some barriers to that. And we talked a little bit about that in terms of the power imbalance between the defendants and the plaintiffs in this kind of space, but also there are pressures on doctors that shape the way they go about their business. And there are pressures on scientists that shape the kinds of questions they can ask and the kinds of research that they can do.
I think that there are broader political and economic constraints that shape the political will of the people but also shape the everyday capacity for professionals to be able to research this further, to be able to give patients the support that they need, and to be able to even be open-minded and sit down and really listen to patients.
That takes time and doctors are really time poor and increasingly time poor and are often expected by the state to be gatekeepers and to make sure that they're not providing assistance to people that may be considered undeserving or whatever. So these kinds of pressures then make doctors orient themselves towards people with, you know, new or uncertain conditions in particular ways.
And so I think there's accommodation. I think there's also a way in which we need to be able to support doctors and perhaps adjust our legal processes such that more genuine listening and dialogue can play out. Because that's the way we're going to better understand what's going on.
[00:28:05] Aaron Goodman: On a side note, you talk about Galileo and I wanted to bring Galileo into the discussion briefly because there are people who challenge the status quo. There are doctors and researchers and patients and patient activists who say this is not working the way it needs to, we need change and often they're seen as deviants. You write about deviants and Galileo, he wrote, he famously theorized that the earth revolves around the sun rather than the other way around.
He put in motion a process that discredited prior beliefs about the sun, geocentrism, and entirely changed the way European society thought about the world. And he was put under house arrest. There's repercussions for people who challenge the system.
[00:28:53] Tarryn: Yeah, absolutely. And I think there are a lot of people who are attempting to change the system and are coming up against quite significant disincentives and barriers and also sanctions when they try and I think that's really interesting, both in terms of the battle for legitimacy for MCS, but also in lots of different kind of cases where we have something that is not currently understood from a medical or legal perspective.
And then people are having to fight to have their claims understood and recognized. And so I think the role of the maverick or the change agent is a really important one. And that's something that I've been really interested in and talking to doctors and lawyers and journalists and politicians feel really strongly about the plight of people with chemical sensitivity and are really trying to make a difference, but are facing challenges in doing that.
[00:30:01] Aaron Goodman: Yes. And maybe everyone who has MCS maybe they're mavericks too, in the way they speak openly about their lived experience with doctors and ask to be treated with respect and to be heard and validated. So what will it take for MCS do you think to be recognized as a physiological illness by doctors?
[00:30:24] Tarryn: That's a really big question that I don't have the answer to. I just want to agree with what you said before, which is that people with chemical sensitivity and more broadly the environmental health movement are doing incredible work at mobilizing new ways of thinking about science and at collecting lay evidence.
To be able to show the interaction between environments and bodies and health in ways that medicine doesn't even understand yet. And I think that's really incredible and needs to be celebrated. In terms of what can be done, I think drawing on what we've already been talking about, I think there needs to be genuine listening and dialogue, such that we better understand people who are experiencing chemical sensitivity and how they've experienced that and what's triggering it. And I think people with chemical sensitivity, like you and I were talking about earlier, have a sensitivity to environments that we can learn a lot from.
And so reframing them as experts of their own experience will shape the doctor-patient interaction in quite a different way than seeing them as just patients who have a particular story which differs from the doctor's story, if that makes sense.
[00:31:57] Aaron Goodman: Yes, and you write that environmental physicians, ecological medicine is making an important contribution and you also note just to recap that people with MCS are acting like citizen scientists, if we could use that term, and you write that many of us have studied medical science extensively, and you write we created our own libraries and consulted with supportive toxicological experts to explain their conditions.
So many people listening are doing their own research and figuring this out as we go. And just because we have to, people who got ill before the internet, we had to do a lot of our own sleuthing. And so it's a lot. There's a lot more information available now, and we can only hope that there will be more available as we move forward.
[00:32:47] Tarryn: Yeah. I found so many of those stories incredibly inspiring, actually. And I spoke to people who had maybe even finished high school at year 10 or something, but had basically become toxicological experts just by home research because they had to, because they had to find the causal link between the chemical that they're exposed to in their workplace and the symptoms that they ended up developing.
They would be providing information to their legal team that would ultimately help their case to be successful because of this incredible lay expertise that they developed. And there was also incredible stories of support where, especially in my work where I surveyed the chemically sensitive community about their online interactions with each other in peer-to-peer support groups.
And there were really amazing stories of people sharing knowledge, whether it was practical everyday tips about how to fortify their house against chemical exposures or you know, creative workarounds for how to get through hostile bureaucracies, or whether it was just socio-emotional support, helping someone through a really difficult time, because as we know, there are really high rates of mental stress and anxiety and even suicidality with people with chemical sensitivity. So the more that people can support each other in these online spaces, the better. Those stories were so inspiring to me.
[00:34:26] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit ChemicalSensitivityPodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. To keep up with the Chemical Sensitivity Podcast and learn more, please follow the podcast on Facebook, YouTube, Instagram, X, and TikTok. Thanks for listening.
The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about Multiple Chemical Sensitivity.
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