From Dismissal to Support — Rethinking Care for MCS: Téa Christopoulos, PhD Candidate

This episode is great to share with your doctor or healthcare provider. 

We explore how medical visits could become more supportive for people living with Multiple Chemical Sensitivity (MCS).

We focus on listening, trust, and the responsibility clinicians have to support people with chronic illness. And how small changes can lead to more respectful, effective care.

Aaron Goodman speaks with Téa Christopoulos, PhD candidate and sessional instructor at the University of Toronto, working across the Faculty of Kinesiology and the Joint Centre for Bioethics. Her research explores narrative medicine and Chronic Invisible Disabilities, examining how lived experience can reshape care to be more ethical, responsive, and truly patient-centered.

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2025 paper by Téa Christopoulos:

An Ethics of Care, Relational Suffering, and Contested Invisible Disability

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Transcript

[00:00:00] Aaron Goodman: You are listening to The Chemical Sensitivity Podcast. I'm Aaron Goodman. What happens when someone living with Multiple Chemical Sensitivity or MCS walks into a medical appointment and isn't believed? And what would it take for that same encounter to become one of support, understanding, and care? In this episode, we explore how medical interactions can move from dismissal to support.

For people living with MCS focusing not just on what goes wrong, but on what can be done differently in real clinical moments. My guest is Téa Christopoulos, a PhD candidate in the faculty of Kinesiology and Physical Education at the University of Toronto, and a trainee with a joint center for bioethics. Téa's work focuses on ethics of care, relational suffering, and how clinical [00:01:00] encounters shape the experience of illness.

Together, we walk through real world examples:

What happens when people with chronic invisible conditions including MCS, are misunderstood, dismissed, or left without answers, and what clinicians can do differently in those moments.

We look at how clinicians can respond and they don't have clear answers.

How to communicate uncertainty without dismissing people. 

What it means to truly listen when someone is struggling to explain complex, hard to measure symptoms. 

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Scroll to the bottom and please consider sharing the podcast with someone in your life who may benefit. Whether it's a friend, family member, healthcare provider, colleague, or employer. Growing this community helps bring greater awareness to [00:02:00] MCS supports people who are often navigating it alone and encourages more informed conversations, in Medicine and society.

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Please subscribe to the podcast wherever you get your podcasts. To learn more, follow the podcast on YouTube, Facebook X, Instagram, blue Sky, TikTok. And as always, you can reach me at aaron@chemicalsensitivity podcast.org.

Thanks for listening!

Téa Christopoulos: 

Téa, welcome and thank you so much for taking time to join me on the podcast. Would you like to introduce yourself for listeners and talk a little bit about your research, please? 

[00:02:43] Téa Christopoulos: Of course. Thank you so much for having me, Aaron. So my name is Teia Costopoulos.

I am a senior PhD student and sessional course instructor at the University of Toronto in the faculty of kinesiology. I'm also pursuing a joint specialization in bioethics, and my research [00:03:00] interests span, you know, a couple of fields. I'm really interested in pain and suffering. I also study invisible disabilities, specifically those that are medically complex and uncertain.

I'm also really interested in the medical humanities, specifically narrative-based medicine, and I would say the aim of my PhD research is to eventually build a framework. That can be integrated into medical undergraduate curricula to enhance the learning, um, for undergraduate medical students, how they learn about invisible, invisible disabilities and how to navigate medical uncertainty in these contexts.

[00:03:34] Aaron Goodman: Why do you think that's important? And when you talk about CID (Chronic Invisible Disabilities), why is your research important and what disabilities are you really considering, including MCS? 

[00:03:48] Téa Christopoulos: Right. So I'll start with the disabilities that I'm including. So I'm including those invisible disabilities that are very hard to objectively quantify.

Right? So invisible disabilities do span a myriad [00:04:00] of conditions from mental health conditions to physical health conditions, to neurological impairments that are not outwardly visible or apparent or obvious. But there are a subset of these invisible disabilities that are hard to quantify objectively.

So I'm referring to those that are hard to quantify or measure through a blood test, an MRI, an ultrasound, an x-ray for example. So those that require on qualitative interpretation as a means of diagnosing in addition to these quantitative means, but sometimes in place of them. So those types of conditions really introduce what's called medical uncertainty in the clinical encounter.

And we know from research that. There are a lot of negative implications that can arise, especially for patients diagnostic delay, dismissal skepticism, some of which unfortunately do extend into clinical encounters, which do have negative impacts on mental health, sense of self wellbeing, and especially in a post pandemic world where these [00:05:00] invisible disabilities are becoming more prevalent and common.

I do think this is timely research. 

[00:05:06] Aaron Goodman: Absolutely, and I think that will really resonate with listeners with MCS and it's important for clinicians and research researchers as well. Te, do you wanna talk a little bit about what brought you to this research? 

[00:05:19] Téa Christopoulos: Of course. So actually my background actually started in the performing arts.

So when I think about myself as a child, I had a knack for theater, musical theater. I went to a performing art school. I loved to sing and act, and so storytelling was really a way for me to communicate with the world, connect with others, and really understand my place. And so I also had this passion for understanding the human body and health and science.

Which ultimately led me to pursue my Bachelor of Kinesiology degree. And so these two passions really felt separate for a while until it was the fourth year of my undergraduate degree where my now PhD supervisor introduced us to [00:06:00] narrative-based medicine, which is essentially and simply put bringing storytelling into the healthcare context.

So, not surprisingly, this really piqued my interest and it got me to reflect on how narrative-based medicine. Can positively impact the care for invisible disabilities. And actually these two fields haven't really been studied together in unison or rarely so in the academic literature. So I would say that is where my motivation for studying, um, these concepts really comes from.

[00:06:30] Aaron Goodman: And have you seen people in your life, whether it's family members, friends, loved ones who've experienced challenges in the clinical encounter, and has this motivated your research? 

[00:06:43] Téa Christopoulos: Uh, definitely so, right. So we know that, um, despite technological advancement and scientific advancement, yes, we are li living longer, but the truth is that we will all come to know people who will experience a period of disability or health and sickness in their lifetime.

So yes, this is becoming [00:07:00] increasingly common. And if I could have, you know, a role in improving these clinical health encounters. And impacting trust and enhancing that therapeutic alliance. Um, I'm really grateful to have that opportunity to do so. 

[00:07:15] Aaron Goodman: If we look at the clinical encounter when people with MCS and other chronic invisible disabilities illnesses are in the clinical setting with doctors, healthcare providers, it often doesn't go well in your understanding.

What are some of the things that often don't go well for us as patients? And what could clinicians do differently in these moments? 

[00:07:40] Téa Christopoulos: This is a, this is a good question actually, a very kind of multi-layered question. So I'll break it down. What could be going on in this clinical encounter? So I study something called relational suffering, and it actually is this reconceptualization of what suffering is.

We sometimes think that suffering only belongs to the [00:08:00] patient, and understandably so by virtue of their vulnerability as a patient. By virtue of them, you know, undergoing this illness experience or seeking treatment for a disease, we do think of them as like the only party in the encounter as suffering.

But the truth is, and based on research, suffering doesn't really operate in this way. So, although a patient may be suffering, what actually can happen is the physician may also be suffering as well, and this may look differently than how the patient is suffering, right? These, these types of suffering can manifest in different ways.

So for an example, as a patient is suffering from, you know, a lack of answers or objective evidence to quantify what they're going through, a diagnostic delay or dismissal. So too may physicians be suffering from that medical uncertainty, really not knowing what to do next. Because the lack of scientific evidence or objective biomarkers that exist to kind of help them treat the patient, they also have their own, you know, professional anxieties or frustrations or time constraints that they're [00:09:00] operating with and in limited resources.

So it really is imp. Important to understand that suffering can almost occur in this cyclical nature. It can really be co-produced in these encounters and shared, and it moves and it circulates. And so when I think about the breakdown of a therapeutic alliance mm-hmm. I really think how it's important to understand that suffering operates in this way. 

[00:09:24] Aaron Goodman: Mm-hmm. 

[00:09:25] Téa Christopoulos: Instead of, you know, only targeting our interventions toward alleviating suffering in patients, we could potentially be developing tools and frameworks that also encourage physicians to be able to recognize that suffering within themselves. And not only that, to understand how that suffering impacts the patient and co-produces their own suffering, their own disability, and potentially increase the invisibility of their own condition, which we know has several, uh, negative implications. 

[00:09:56] Aaron Goodman: This is fascinating and part of me wants to [00:10:00] push back a little because if I think of myself and others with MCS in the clinical encounter, we have needs in in that moment. And it's a, seems like a big ask to be sort of thinking about what the clinician is going through, but I don't think you're telling me it's my job or our job to care for the clinician.

I think you're telling me, and please tell me if I'm right. As a researcher, you're motivated to inform medical practice so that clinicians can understand their own suffering and, and treat us in more helpful ways. Is that right? 

[00:10:37] Téa Christopoulos: Absolutely. And also looking at how medical education can be improved. Not all frameworks and tools are geared toward the suffering of patients, but that they can actually learn ways to recognize it within themselves and understanding that their own suffering or what they may be undergoing in that clinical encounter can impact the care of the [00:11:00] patient. It's not just always looking as the disease is impacting the patient or the illness, but you know, if we're looking at kind of suffering relationally, it really is what is occurring in that space between both physician and patient. And it's kind of. What falls under this ethics of care, how we look at what care is right, it is involving two people.

It is involving, you know, this conception of interdependency and interconnectedness between humans. And so if we are to truly care about patients, we also must care for ourselves. 

[00:11:33] Aaron Goodman: And what would that look like? You know, in the absence of of biomarkers, there may be a day when there will be a blood test or other kind of tests that clinicians can do to confirm our MCS, but in the absence of that.

There's narrative going on. They're, they have to listen to us in, in time compressed environments. What could clinicians do differently in their training or their approach and what can we, as people with invisible [00:12:00] illness, including MCS, do? 

[00:12:04] Téa Christopoulos: Right. So again, another multi-layered question. Yeah. So I study what's called an ethics of care.

It really is an approach to healthcare that's predicated on the ethical task of caring. Right? And what does that mean? What does that mean To care about someone to care for, someone to feel cared for, right? Mm-hmm. And if we think about it, care virtually permeates all of our relationships in life. We care for our children, our.

Friends, our family, and in professional contexts, or our students and our patients. So it's really, you know, focusing on those caring relationships and building upon that attachment, that connection, that receptivity, and that reciprocity. And what that does is it really foregrounds the patient clinician relationship as integral to the illness experience, to how it shaped suffering and ultimately the trajectory.

Of that illness. So instead of focusing on curing [00:13:00] disease and operating with uncertainty and almost craving that in the absence of those biomarkers, in the case of MCS 

[00:13:07] Téa Christopoulos: Even in the midst of these unknowns or the state of doubt that we're currently operating within, how can I still meet the patient where they need me to meet them, because it is my ethical task as a physician to do so.

So it's almost shifting the focus on curing to understanding. And caring and understanding again, that we are interdependent, interconnected beings that we are. We do not exist in silo, but a physician needs a patient and a physi and a patient needs a physician. So I think this kind of changes our conception of these encounters to a more kind of collaborative playing field, and what I think patients can do is really leverage the power of their narrative, their patient testimony. In the absence of biomarkers and objective findings, the patient testimony [00:14:00] becomes an indispensable tool from which to diagnose. 

So not only do patients need to be able to share their narrative and have that space, but also physicians need to develop that narrative competence, which is a, a hallmark of narrative based medicine, but ability to act on, receive and interpret story, to be able to know what to do with it, when it is heard, and to get, assign it the same weight as clinical data as you would to a blood test, an x-ray and an MRI.

[00:14:30] Aaron Goodman: Now that's really important to assign it as much value, the stories, the narratives we bring. 

[00:14:38] Téa Christopoulos: Exactly, and I know probably thinking about that, we think of time constraints. We think of limitations in the clinical encounter, how we often have 10 or 15 minutes, and how are we going to have this time, right?

But there is research to suggest that in the realm of practicing narrative-based medicine, that when we implement it, it actually saves time down the road. And it actually can preserve that trust [00:15:00] earlier on so that we have those strong therapeutic alliances and we have less diagnostic delay dismissal and more enhanced outcomes for the patient.

So I think it's very important to think about the ways in which we can really make space for narrative, both in the clinic and in medical education. 

[00:15:19] Aaron Goodman: I'm thinking of what that could look like as someone with MCS another chronic invisible illnesses and disabilities. I'm thinking about keeping a journal and noting my reactions, what I'm reacting to the symptoms, and sharing that with a doctor during the visit or, or before even maybe I write a piece of fiction or a journal entry and or a poem and bring it with to the visit.

Are these the kinds of methods. Te that people can work with to share with clinicians. 

[00:15:54] Téa Christopoulos: I think that would be a really innovative way to share a narrative. Right? And it perhaps, it may be more [00:16:00] comfortable or easier for patients to share their narratives in this way. And as you ask me this question, it really, uh, makes me think about how narrative-based medicine has been taught in schools and in different.

Programs. They are taught with reflective capacity and listening and creative writing to interpret narratives in these ways through fiction, through engaging in nonfiction, fiction, arts, dramatic arts. So I definitely think this narrative sharing could take that form. I definitely think we need more research to kind of investigate how narratives can be shared in this way, but for sure I can see its effectiveness in clinical practice for patients such as those with MCS.

[00:16:37] Aaron Goodman: And one of the challenges that we face people with MCS is there isn't a diagnostic code. The world health organization hasn't adopted one or accepted one, and that, you know, has results across the board. When when we go to the clinician, they often cannot diagnosis 'cause there isn't a diagnostic code.

In the absence of that, and in the absence of clear [00:17:00] biomarkers and tests, what value does the narrative have? What can a clinician do with that? They can empathize, they can listen, but what kind of, uh, results can it yield? 

[00:17:14] Téa Christopoulos: So what we hope for when we study narrative-based medicine is again, for that patient narrative to be assigned the same weight as objective biomarkers, and it's really understanding, again, with medical uncertainty, despite technological and scientific advancement, we will always have uncertainty in medicine.

We're never going to get rid of it. So instead of looking at it as a threat or instead of always striving for that certainty, it really is about learning to. Operate within that uncertainty productively and collaboratively with patients. So despite not having codes or biomarkers, I really think it is about building that therapeutic alliance and working with the patient.

You know, exercising that sort of epistemic humility where. Physicians [00:18:00] kind of acknowledge the limits to their expert domains, right? I don't know what this is, but as a patient, can you help me? Because patients actually are experts of their own illness experience. Once we start to recognize that, then I really do think that these encounters become a lot more collaborative, and I think we can be more productive even in the absence of these objective biomarkers or evidence that, you know, medical culture kind of privileges.

[00:18:28] Aaron Goodman: I want to ask, have you come across any specific examples of other illnesses, people with other chronic invisible illnesses, including perhaps fibromyalgia or MAs, cell activation syndrome, um, M-E-C-F-S or others, uh, where patients, people with lived experiences have brought narrative to clinicians and had it be a positive thing.

[00:18:57] Téa Christopoulos: Yeah, so this is definitely an emerging [00:19:00] field and definitely a knowledge gap that I really seek to fill with my PhD research, but with some of the conditions you've mentioned, so myalgia, encephalomyelitis, or chronic fatigue syndrome, we have pots or postural orthostatic tachycardia syndrome, a form of denomi, a fibromyalgia, a lot of chronic pain syndromes.

A mast cell activation syndrome that you mentioned, MCAS. These are the types of conditions that really saturate the literature in this context. So especially with pain, we see a lot of dismissal, accusations of malingering, disbelief because again, pain is so subjective, right? My, for example, my. Four out of 10 pain might be someone's nine out of 10 pain.

Right? And as physicians, we can't objectively quantify that pain, especially in the absence of inflammation or lesions or something that we can, again, objectively and visually quantify. So in my own research, especially as I was starting out with my kind of comprehensive examinations, I really studied [00:20:00] pain.

And what is known about pain as a way to understand how these other types of, um, invisible disabilities evolve and how they are kind of educated and treated in a clinical context. 

[00:20:11] Aaron Goodman: I can understand that pain is often dismissed and I, and I know from the research that women and racialized people, visible minorities, people with less economic status.

Does the research show that these people are often dismissed? Their pain, their symptoms, their fatigue, their illnesses? 

[00:20:32] Téa Christopoulos: One hundred percent, especially when we're looking at gender and we're looking, for example, at a condition like fibromyalgia, which disproportionally impacts women compared to men. Women are historically disadvantaged and dismissed in the, uh, clinical encounter.

And this is something, you know, an area of research that I, I think it has. A lot more research and how a narrative-based medicine could potentially help women in these contexts. Mm-hmm. Share what they are going through [00:21:00] and alleviate some of their suffering and their perceived invisibility of their conditions. 

[00:21:06] Aaron Goodman: In the clinical encounter, often the discussions don't go well We leave feeling dismissed. Misdiagnosed, specifically, what are some things that the doctor could do more of? Would you say differently? 

[00:21:23] Téa Christopoulos: Right, so I think besides, you know, privileging the patient's narrative, I think what we could do is sometimes what happens is what's called an epistemic injustice.

Um, may occur, um, for patients, what that refers to. It's also a lack of credibility that is assigned to a knower or a holder of information, and so this becomes. Quite problematic for the patient because you know, they are again, the expert of their i their illness experience. And in the absence of a lot of objectivity and concrete findings, this patient narrative becomes even more [00:22:00] important.

So I think from a physician standpoint, I think assigning that. That capacity for patients to know and to hold information and to almost place 'em a bit higher on that epistemic hierarchy, I think is extremely helpful, especially in these contexts when we're talking about contested and more medically complex and visible disabilities.

[00:22:23] Aaron Goodman: One of the challenges for folks with MCS is that it's often psychologized. We're often told it's in our heads or, and unfortunately some of the literature, I think inaccurately. Makes claims that people with MCS have anxiety disorder or psychological conditions. We can have both, right? One can have lived experience of trauma or psychological disorders and have MCS, but we're often told, it's just in our heads and so we're often not believed.

Our stories are not believed and, and that's really challenging. I wonder if you have any thoughts around that. 

[00:22:59] Téa Christopoulos: I do have [00:23:00] thoughts because what me when, when you kinda pose this question, it really does make me think of medical uncertainty, right? And so what can happen with medical uncertainty when it kind of, you know, is introduced in a clinical encounter.

It's quite anxiety provoking for patients, but it's also quite anxiety provoking for physicians. And again, it really is this subjective perception such that physicians will all have their own unique tolerances toward dealing and navigating with clinical ambiguity. Or medical uncertainty. So when I think about psychologizing, um, some of these conditions, sometimes what can happen is when we're a bit uncomfortable with uncertainty, physicians might resort to what's called premature closure, where they may consider, you know, other conditions and that kind of, kind of closes off acknowledging others or considering alternative diagnosis that may be more plausible.

And so sometimes what may make a physician feel less anxious and a little bit more certain kinda labeling something is what IMP [00:24:00] amplifies the suffering for the patient. And so I really do think when we educate for medical uncertainty, we have to kind of be more explicit about it and realize it's downstream effects and how we can operate more productively and collaboratively in this context with patients.

[00:24:17] Aaron Goodman: Do you come across other illnesses that are psychologized and narratives are also dismissed? Oh, it's just in your head. 

[00:24:25] Téa Christopoulos: So definitely when we talk about pain narratives and, uh, fibromyalgia and me cfs, these. Conditions have been historically delegitimate in many contexts, and that's what one of the reasons why I ended up first in my comprehensive exams, really studying pain in order to understand what happens in these other conditions.

But what I notice is, you know, when you land on a physician who is very competent or aware of these conditions. Sometimes these negative encounters don't really occur in ways we may think they're much more positive, and so that [00:25:00] invisibility actually lessens and more visibility is rendered. So that's why when I think of invisibility. 

I really do think of it as a context dependent phenomenon such that these invisible disabilities aren't static. They aren't always invisible. But once we land a physician who may have that narrative competence to be able to know what to do with story, perhaps they have more clinical expertise with dealing with these types of conditions, or perhaps they have more empathy.

These conditions can kind of change from more invisible to a bit more visible. And I think that's another important factor to understand about these conditions and really thinking of ways we can leverage, um, the clinician to make these conditions a bit more visible for patients. 

[00:25:45] Aaron Goodman: And there have been illnesses that have, um, become more recognized and accepted by doctors.

Would you say, I'm thinking of Lyme disease for example. 

[00:25:55] Téa Christopoulos: Oh, a hundred percent. And I do think, you know, as time goes on, a lot of these more [00:26:00] invisible, contested illnesses, you know, as research kind of evolves, that will change for them as well. But really in the meantime, I think it is really important if we can really leverage.

The capacities and powers of narrative-based medicine in these contexts, and really think of ways that we can enhance medical education and enhance the way that medical trainees are currently learning about these conditions. So in the meantime, when science is trying to keep up, we know how to handle these conditions and make sure that patients feel heard, validated, and seen.

[00:26:32] Aaron Goodman: I can imagine if I put myself in the place of listeners, people may be, may be thinking about how receptive are doctors and medical training institutions to these methods that you're talking about that are so interesting. Is there a receptivity? 

[00:26:48] Téa Christopoulos: I think that, again, is an emerging finding. We have to find out more about that.

We know for a fact that narrative-based medicine has been, you know, successfully implemented in many programs. We know there [00:27:00] is really good uptake and, you know, positive, a lot of positivity about it. Um, but it really is a cultural shift, a culture shift, because we know that physicians or medicine right now is deeply entrenched in norms of objectivity, of evidence of.

That epistemic authority of, you know, we are the experts. We need to see something in order to know. So I think that this culture is rapidly changing and it's really great to see. And so I do think there is space for more of the medical humanities and for arts, but for thinking of, you know, the, the of literature to kind of have their place within, um, these educational contexts.

[00:27:40] Aaron Goodman: If a medical encounter doesn't go well, if the trust per se is, is broken or fractured, do you have any suggestions for people with invisible illness including MCS? 

[00:27:54] Téa Christopoulos: Yeah, that, that is a great question and a very complicated question to answer because we see in the [00:28:00] literature how trust can be eroded and the negative implications when that happens, because trust is integral.

To this patient physician relationship that really is this unit, right, that we want to preserve. We want that therapeutic alliance to remain intact. So I think when trust, you know, breaks down, I really think it's important to understand that again, we are not operating individually in this encounter through our conceptions of care and suffering as relational, they really are occurring together.

Interconnectedly. So if a patient perhaps is experiencing some form of mistrust or trust has eroded, then so too, do I think the physician is in experiencing something, right? Maybe it's frustrations or anxieties with navigating medical uncertainty, for example, or not being able to meet the expectations of their patient.

So I really think patient-centered care becomes very important here, but also that collaboration. So how can we leverage the capacities of both parties? [00:29:00] So I really do think that the physician here, and again, I'm so passionate about medical training and medical education, I really do think this is where we can better prepare our physicians.

To make sure that this trust does not get eroded, and to maintain this strong therapeutic alliance and for patients, I would encourage them to feel that they have this epistemic authority with their patient testimony, right? Their stories are valid, their suffering is valid. E, regardless of the fact that science has caught up with their condition, what they are going through teal. And the more and more that these patient narratives are shared with physicians, I do think that we can inch forward toward that narrative-based medicine and looking at medicine as a storytelling enterprise. 

[00:29:47] 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 [00:30:00] supported by the Marilyn Brachman Hoffman Foundation. And listeners like you, if you wish to support the podcast, please visit listen.chemicalsensitivitypodcast.org. And your support will help us continue making the podcast available, creating greater awareness about MCS.

To learn more about the podcast, follow the podcast on YouTube, Facebook, Instagram, blue Sky and TikTok. And you can reach me at aaron@chemicalsensitivitypodcast.org. 

Thanks for listening!

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

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