Aaron Goodman: Welcome to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a long time journalist, documentary maker, university instructor, and communication studies researcher. And I've lived with Multiple Chemical Sensitivity, or MCS, for years. MCS is also known as Chemical Intolerance and Toxicant Induced Loss of Tolerance, or TILT.

The illness affects millions around the world. And the number of people with MCS is rising just about everywhere. Living with MCS means dealing with a range of overlapping symptoms, including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes and more. 

Trace amounts of chemicals and synthetic fragrances in household and personal care products can spark a cascade of debilitating symptoms. Finding accommodations can be very complicated. Dismissed by healthcare providers, employers, 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.

In this episode, I'm speaking with Charee Thompson, PhD. Charee is an associate professor in the department of communication at the College of Liberal Arts and Science at the University of Illinois in Urbana Champaign. Charee is also an associate professor in the department of biomedical and translational sciences at the Carl Illinois College of Medicine.

At the University of Illinois, Charee specializes in patient provider communication, particularly for people with chronic non-visible, not well understood, underfunded and stigmatized illnesses. 

She's co-author of a very interesting 2023 paper titled "Women's Experiences of Health-Related Communicative Disenfranchisement." I provide a link to the paper in the episode show notes. 

In our conversation, you'll hear Charee explore how women are often blamed and dismissed for their health conditions, how women have been excluded from research about health, how parents of girls can support their children while navigating the healthcare system and more. 

Aaron Goodman: Welcome, Charee. Thank you so much for taking time to talk today.

[00:03:11] Charee T.: Thanks for having me.

[00:03:13] Aaron Goodman: Pleasure. Would you like to perhaps talk a little bit about your motivation for exploring the themes we're going to talk about today?

[00:03:21] Charee T.: My motivation for studying women's health dismissal stems from a long line of research, which I was trying to understand why people talk about feeling blown off or feeling like healthcare providers were not being supportive or listening to them. And so I wanted to figure out why that's happening and what I can do about it or what kind of platform I can provide to help women and others who feel like they're being dismissed.

[00:03:45] Aaron Goodman: A lot of listeners have Multiple Chemical Sensitivity      and your research doesn't focus on dismissal of people with MCS or chemical intolerance, toxicant induced loss of tolerance. But have you come across MCS in your research, life or professional work and how do you view it in this framework of dismissal?

[00:04:09] Charee T.: Yeah, absolutely. In our study, we spoke to women who broadly self-reported that their health had been dismissed by people close to them and health care providers. In my personal life, my experience with MCS was with a former colleague who requested like no strong perfumes in the office and other sorts of things that would prevent triggers for her and generally the comments around the office were like, "Oh, whatever." Or people were pretty dismissive, maybe not to her face necessarily, but you definitely got the sense that people did not take it seriously. And looking back now, the research that I've done, I think, wow, I probably could have been a much more supportive colleague and also advocated on her behalf. When it comes to what I study, I think I may not focus on MCS in particular, but given that it tends to affect women more, that it's not immediately visible, that we could argue that it's underfunded and not well researched. All these variables, right, these things stack up like other health conditions that make them more prone to being questioned or contested or challenged by others.

[00:05:17] Aaron Goodman: Do you want to talk a little bit more about the study you did focused on dismissal of women who have medical issues?

[00:05:24] Charee T.: Yeah, absolutely. So in our study, we spoke to over 30 women who said that their health issues had been dismissed both in their personal lives and also with their health care providers. They had a range of health issues. Some of them we consider more, some are more physical like pain or more like mental illness like depression or anxiety. And we documented really in a narrative way how they talked about how most of their experiences started really early. A lot of the issues, as you can imagine, like reproductive health care or mental illness, which we know sort of emerges in adolescence and young adulthood. And so many of these women had stories that stretched years and decades, depending on their age. When they're younger, people say, "Oh, that's normal for menstruation" or, "Oh, you're just young and anxious and figuring yourself out." And so they could trace it back pretty far. As I can imagine many listeners here feel like it's been a long journey. So to speak, there was some sort of critical tipping point. Maybe they had some sort of health crisis that kind of woke everyone up, right. It woke their family up, their healthcare providers took it more seriously. 

Over time, the women we talked to feel like they sort of gained their voice. They felt like they could push back when people blew them off or dismiss them. Um, and that came from gathering stories from other folks. This is one of the great things about social media and the internet is you find other like people. So they felt more empowered because they knew they weren't the only one. It's a very isolating experience when you feel like no one understands what you're going through and you wonder if you're the only person. But truly, I think our purpose in that was to talk about like, what are some of the not just psychological hurt feelings and feeling dismissed, but also what are some of the health consequences of being blown off for so long or dismissed, delayed health care, living with pain. A lot of folks who have chronic illnesses, what some of us may consider pretty significant, they go, "Oh, I'm just used to it." And I wonder if people should be used to it. I'm not sure they should get used to things, particularly if they're not being attended to.

[00:07:24] Aaron Goodman: In your paper, you write about women seeking care and encountering dismissal, um, and minimization by healthcare workers, um, as well as blaming, shaming, and you talked about normalizing their pain. Psychologizing and often women are told that they're crazy and they feel dehumanized, shamed and there's a sense of loss. How common is this?

[00:07:53] Charee T.: Yeah, that's a great question. I think it's really common and I don't have exact figures and actually one of my goals is to do a study where I just basically gather some data on how common and how often people feel like they've been dismissed for their health issues. So I think I would venture to guess that perhaps every woman has a story of maybe not being dismissed but maybe someone didn't understand you or didn't respect your values or you felt your pain was minimized or not taken seriously. There are these sort of permutations or ways that we feel like we're not seen or heard. We're valued in health care.

[00:08:26] Aaron Goodman: Yeah, and you mentioned that sometimes this can have serious health consequences. We probably all know, I certainly do know women who have gone on to develop further illnesses or worse illnesses and even die because of dismissal. How often does that happen?

[00:08:47] Charee T.: Oh, yeah, that's a great question. So in our study, all of the women talked about how some of the material, we'll call it material consequences of being dismissed or delayed access to care, symptoms worsen, sometimes for women, undiagnosed issues, closed options for them when it came to fertility or for treatment because they had aged out of some options. And so it has significant impacts, not just on health, but just people's lives, like to spend decades of your younger years suffering and not having anyone do anything about it is pretty terrible, frankly. In some of my other work, I focus on the particular case of black maternal health, which there I think to what you spoke to is where we see that across all income and education levels that black women's pain is not taken seriously and it leads to catastrophic consequences, black mortality, and then also infant loss. We have everyday mundane sort of dismissals. And then we have people who lose their lives because people don't take their health issues seriously.

[00:09:50] Aaron Goodman: I, I think we know when it comes to MCS that women who are visible minorities, racialized women, women who face economic challenges, face disproportionate levels of exposure to toxic chemicals. And I gather from your study that women in this group face more dismissal by medical professionals than others.

[00:10:14] Charee T.: Yeah, absolutely. This brings to mind the notion of intersectionality, which I think is gaining more mainstream attention and that for some women, depending on sort of the multiple identities that they hold, they might be dismissed because they're expected to be strong or it's not believed that they feel as much pain. That tends to be stereotypes of black women. But on the other hand, Latino women tend to be painted as emotional and dramatic. And so I think when we think about dismissal, we can assume that women's experiences, whether it's MCS or otherwise, are a monolith, right? It depends on their race. It depends on their sexual orientation. It depends on their disability status. It depends on education and these sorts of things. And like you said, some people occupy more precarious spaces in our society. If you work in a space where you're constantly exposed to chemicals, what power do you have when you need to work for a living? And so I think taking into account all those aspects of someone's identity in life are really important.

[00:11:13] Aaron Goodman: I wanted to ask about men, because men also have illnesses, of course, and Multiple Chemical Sensitivity, although more women do, and people who are non-binary, all people experience dismissal, correct? But women experience it more frequently.

[00:11:31] Charee T.: Yeah, absolutely. I think that's a really important point. Just as we can't assume all women experience dismissal in the same way, or they all do, I also don't want to give the impression that men all don't also experience dismissal. If we think about sort of our expectations for how men perform or what pain looks like to them or suffering, right? We expect stoicism. We expect them to sort of man up or be strong or these sorts of things that we say. Men also can be dismissed, particularly if it's something that is not as prevalent in the male population.

[00:12:03] Aaron Goodman: You write about the responses from women, and I believe you're right that a common response when faced with medical dismissal and dismissal by it could be colleagues or friends and family is silence. Do you want to talk a little bit about common responses and perhaps how women are reclaiming their voices?

[00:12:24] Charee T.: Yeah, absolutely. In that paper and others we've talked about, here's a problem. What do women do and what can others do? And so a common response is silence. Partly because if you're a young woman and this is your first time experiencing X, and people in your family are saying, "Oh, that's normal for X." And then your doctors say that's the case or it's a wait and see scenario. You think, I'm just going to be quiet and go along with it and see what happens. And because you are, you have less power in those relationships, you sort of assume that people know better. And so silence is often the first and common response, not just in young women, but generally the first and common response. And over time though, the women feel terrible. They feel like this isn't right. They hear other stories. They think, what are other ways that I can advocate for myself and for other women? And we talk about in another paper, how some women in interactions engage in sort of strategic communication. I want to preface that these strategies that they talk about engaging. I'm not saying that are right or everyone should do because I often feel like women shouldn't have to work this hard to be taken seriously or anyone should have to work this hard. Um, but this is what women say that they do, um, when they're being dismissed. 

One they talk a lot about managing their emotions because one of the tricky things about experiencing pain is that particularly if you're a woman, is that if you don't show any emotion or distress, then you must be just fine. But if you show a lot of distress, then you're being hysterical. And so what is the right amount of pain or suffering to express? So it's about managing your emotions, not being too emotional, but also not holding it all in. They also talk about evidence. They talk about collecting evidence before appointments. They talk about bringing medical records. 

I have a vivid memory of a woman I spoke to who, she was having some sort of heart issues that weren't being taken seriously. And so she started recording her Fitbit data. To bring her Fitbit in to say, look, I'm having these episodes of tachycardia and here's the evidence. And then there's also a part about making claims or letting your doctor know that you are a credible patient, right? Maybe you invoke your education. Maybe you talk about how many years that you've had this illness and how many doctors you've talked to who have confirmed it. 
Maybe one way of seeming like a more credible patient is you bring someone else with you, typically someone older. Or typically a male. So a lot of the ones we talked to brought their partners, typically males, not always. Or women talked about how they brought their parents when they were older. And so all those things women say that they do to be read as more credible in those interactions.

[00:14:57] Aaron Goodman: Oh, that's so fascinating. On a personal level, I'm like, yes, yes. Although I'm not a woman, but I'm sure a lot of listeners are. Uh, thinking on those same lines when it comes to the psychogenic dismissal and this happens a lot with MCS. It's all in your head. We hear some researchers argue that it really is a psychological psychiatric problem and anxiety disorder. And we know people with MCS can have anxiety, but it doesn't mean MCS is a psychological or psychiatric illness. Uh, and that's really challenging. I think for a lot of folks with MCS to be met with that kind of misdiagnosis. Um, it happens with people who have all kinds of illnesses and how do you view that particular kind of dismissal?

[00:15:51] Charee T.: Yeah, absolutely. In the words of one of the women I spoke to, and she said, "I don't deny that I have anxiety. That is not the issue, it's you suggesting I have anxiety. The issue is that you are not validating the other experiences that I'm having," right? You cannot scapegoat one set of symptoms for another. And so I think providers tend to underestimate how open and willing most patients are to explore options of what it could be, right? But providers first have to validate what you are experiencing as you are experiencing. You are the expert of your body. And providers have to acknowledge that first. Before they can even suggest that anxiety might also be at play or let's explore some options. So I typically, when I talk to healthcare providers, because healthcare training is a lot of what I do, I say, you have to validate their experience as they live it in their body. You have to gain trust that way you have to validate. And gain trust and then gather lots of information and then talk about what the options can be and show that you're going to do everything to explore all of the options before you land on something, particularly something that can be stigmatized or that the person doesn't identify with at all. Right?

[00:17:02] Aaron Goodman: You write about the gender bias in health care, medical gaslighting, invalidation, and you also write about how women's bodies and minds have been far less studied than men's. So how long has this been going on and what's the root of it?

[00:17:20] Charee T.: Oh, goodness. I have, it feels like for all time. Right. But I know in recent history, I think it says a lot that even the National Institutes of Health has really only attempted to correct issues with medicine in the past and medical research in the last 30 years or so, starting with laws in the early 90s that said, hey, you can't exclude women. Just because of costs or some of these other reasons or excuses. 

When we have major government agencies that are in charge of our medical research that have historically excluded women and women's bodies, we have so little knowledge about women's bodies. And we see this in studies on, we talk about heart attack risk. And we saw the red dress campaign and other things, but there's lots of research that shows that women are prescribed less and less potent pain medication for the same health issues or the same pain that men experience. 
And I'd like to say we've come a long way, but I think even in the past that it's only been 30 years that this one large institution that we rely on for medical knowledge has been focusing and trying to correct some of these things says a lot. The origins of the word hysteria. So, I try to help people in my classroom and physicians to, to strike out words that have all these historical connotations that dismiss women, because we don't typically call men hysterical, right? Or we don't say that they're being dramatic as often or whatnot. That's very gendered language.

[00:18:54] Aaron Goodman: You write about how family and friends often discredit women and you've talked about people using terminology like drama queens and irrational. How do you view this and what are some of the impacts?

[00:19:09] Charee T.: Yeah, two things from that research that really stick out to me that make me think and I want to tell so care providers. Okay. As one women were particularly disappointed when they had health care providers who are women who are dismissive. It was you should know better as a woman, right? A lot of women experience this. I've seen other doctors who have been dismissive and I come to you as a woman and expect that you will do better. And so it is particularly I think disappointing when women health care providers are dismissive. Also, women talk about how in families that are supposed to be defined by love and support and caring to have people in your family dismiss your health issues is particularly hurtful. One of my favorite writers talks about, I believe it's Arthur Kleinman, talks about how families or that our local social conditions, our communities, our families, our groups that we belong to are some of the most effective and efficient transmitters of stigma. I don't see that families and friends and partners are as dismissive as healthcare providers in the narratives that I hear, but I, I want people to feel validated if they've been dismissed in their families because it happens all the time.

[00:20:15] Aaron Goodman: For sure. And with MCS, it does happen really frequently. What do you think healthcare workers could do differently? And even friends and family members, yeah, what could folks do differently?

[00:20:29] Charee T.: Yeah, absolutely. I talk about pain, chronic pain, and women's health dismissal is what's called a wicked health problem. Wicked problems are those that are difficult to articulate, like how do you even describe it, pin it down, and also really challenging to solve. I mention this because I think addressing dismissals in women's health care or dismissals for folks with MCS is a complex sort of multi-level problem. So if we start really locally with your relationships, we need to default in our families and our friendships to believe people first. And to validate their experiences and to be there for them. And we need to offer to go to doctor's appointments with them to the extent that we can. Right. Or we need to help them talk out how they're gonna talk to the doctor if they're worried that they're going to be dismissed. Right. People tell me that they practice conversations with their doctors, with those close to them. I think healthcare providers also need to default to belief. Um, and they need to educate themselves. I mean, we have. We have exponential access to information and research that comes out all of the time. If healthcare providers can continually educate themselves on health issues, I think we, people would be better for it. 

I think it's also difficult at the same time, I feel for healthcare providers because our system and here's a system level issue is that our systems give so little time for patient provider interactions. I fear that we're squeezing the empathy out of physicians. It's not an excuse. It's an explanation. Appointments are so short. How do you unpack all the nuances of someone's day to day life and how something affects them when you get no time with your patients? And so I feel like it's really a multi-level issue. But if we start with relationships, we need to validate people and we need to be there for them and think about the strategies I talked about earlier about how we can best support them and prepare them for appointments and equip them with information, whether that's in the form of evidence or other research that patients do and healthcare providers do. So that they can have the best interactions possible.

[00:22:22] Aaron Goodman: Are you aware of any illnesses that have been commonly dismissed, and that are now recognized by health care professionals? And I often hear that multiple sclerosis, MS, was historically dismissed, and now it's not. And I think, for me at least, that gives me some hope that with further research and that physicians, once they get actually read the research because in fact a lot does exist that they will more frequently recognize MCS. So the question is around illnesses that have been stigmatized and are now recognized.

[00:23:00] Charee T.: Yeah, absolutely. Um, I think we have a history of saying that. One of the other health issues that I study is long COVID. Early in the pandemic, when I was reading that people were not recovering, I thought to myself, Oh goodness, I hope this is not another disability community that struggles for recognition. And sure enough, it did, and it took years for funding to become available for long COVID. It may just be that research needs to happen, but if people are contesting whether COVID exists, they're certainly going to contest whether you have long COVID or you did not recover from it. It is more legitimized now. Related to that, what they have found is that people have either COVID induced or, or their symptoms of long COVID look very much like POTS. So, um, I'm going to be talking about the post viral issues that people have long, long had that did not have the recognition that it has now. Another that I share with my own students is Gulf War Syndrome. Again, exposure to toxic chemicals during the Gulf War and sort of the neurological issues that it's caused for hundreds of thousands of veterans, and they have something in common, right? Not visible, not well understood, often challenge our typical notions of what illnesses should look like, right? I can imagine with MCS, it's like, who's allergic to chemicals or how could you have those reactions to chemicals?

[00:24:22] Aaron Goodman: Yes, and it's interesting you mentioned Gulf War Illness and Long COVID because from what I gather, a lot of people with those conditions also report having chemical intolerance, MCS as well. Yeah.

[00:24:33] Charee T.: Yeah, absolutely. And then you have folks who have multiple overlapping non-visible conditions. So, yeah.

[00:24:40] Aaron Goodman: What do you think parents of young girls could do to help ensure that their children's health care needs are met?

[00:24:49] Charee T.: Parents often have to accompany their children to appointments. And so I think, there's a place where you can start and also capitalize on those moments, right? So, advocate for your children, document things, bring that documentation into the doctor's office, do your research, and universities exist for the public. And so you can reach out to university librarians and staff and ask for research on health issues. Because, unfortunately, if you go to the doctor's office and you say, I googled this. That is a cue to dismissal, unfortunately, because it doesn't seem like legitimate information. Ask lots of questions. Some of the things that women told me they did in interactions, rather than say, Doctor, I don't believe you, and you're not taking me seriously, and I think you're the worst doctor ever, would say, can you explain to me, while you think it's X and not Y or can you explain to me why you're saying this and my previous doctor said this. And so asking questions rather than being confrontational also is something they mentioned and that parents can help with too.

[00:25:52] Aaron Goodman: It seems like women have to do a lot of work and that it places an unfair burden on women to do all this preparatory work just to get in conversation with the medical provider.

[00:26:02] Charee T.: Absolutely. Absolutely. I actually have a name for that. I call it credibility work and I've written about that. So all the labor that people endure that is unfortunate, cruel irony, also invisible labor just to prepare for appointments, to prepare for conversations, to be taken seriously where some other people don't have to do that work, right? And they, their health issues are, are taken seriously right out the gate. So I absolutely, I think it's unjust because it's such a wicked problem. I want women to at least you know, feel empowered and give them some tools to be able to resist or respond to these systems and to people who don't take them seriously.

[00:26:40] Aaron Goodman: So in terms of tools, it's, you're talking about bringing research, not Googled. Do you recommend changing healthcare providers if possible? Trying to find a female doctor if possible? You mentioned asking questions and beyond that, I apologize for the two part question, but do you think there needs to be more women in healthcare? Different kind of training and more studies of women's bodies and minds.

[00:27:03] Charee T.: Yeah. Absolutely. I think, and the NIH has also articulated this, that it's not just about doing more research of women's health. It's also making sure that there are more women in healthcare, that there are, especially in, in specialties for which women are underrepresented. For example, I'm doing a study of neurosurgeons and women in neurosurgery, and they make a very few of the residents and the physicians in the field. And when you have something rare or you have something that's not well understood, who do you see specialists? And if we have fewer women in specialist positions who understand. So we need more women at all levels from the research to the bedside. Absolutely. And the first part of your question was...

[00:27:42] Aaron Goodman: Yes, the first part is just simple things or practical things that women can do. Is it a matter of changing doctors if needed? Trying to see female health care provider, bringing research that's not Googled perhaps from a librarian. Some practical things we can do.

[00:28:01] Charee T.: Yeah, absolutely. So for women who worry that their health issues won't be taken seriously or have experienced dismissal before, I would say start by bringing any evidence that you have or data that you have of your health history or the symptoms you're experiencing. Bring someone with you who will make you feel more confident in saying what you need to say. Maybe they can also weigh in on how they've seen things, so bring someone with you. Do some research and bring some research, typically things that come from medical journals or some of these. Peer reviewed sources are read as more credible and if your doctor is not treating you well, I encourage you to leave. If you can, I recognize that some healthcare or some insurances are set up that you can't switch doctors easily. Some people live in um, healthcare deserts where there's maybe one specialist within so many miles and so it is a privilege to be able just to switch doctors if you're able to. 

Aaron Goodman: Would you like to add anything else? 

Charee T.:I just want women and people who with MCS or other health issues, no matter what they are, to feel validated. And you are the expert of your body. And I hope that through research and working with healthcare providers and others in my work, that I can, you know, help them be more supportive and give better care to you.

[00:29:17] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast. I'm hosting 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 chemical sensitivity podcast.org. 

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman and made possible with funds from the Marilyn Brockman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public about multiple chemical sensitivity. 

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