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
Healthcare Invalidation & MCS: Allyson Bontempo, Ph.D.
In the latest episode of The Chemical Sensitivity Podcast, we’re exploring medical invalidation. It's something virtually everyone with Multiple Chemical Sensitivity (MCS) has experienced and it can be devastating.
Researcher Allyson Bontempo, Ph.D. joins Aaron Goodman on the podcast to discuss her work on healthcare invalidation and discusses:
· What she calls an “epidemic” of medical invalidation for people with MCS and other illnesses.
· The consequences of dismissal by healthcare professionals — how it affects us on a personal and human level.
· How people with MCS, as we know, support each other largely online.
· And some strategies for ways we can advocate for ourselves.
Listen at https://www.chemicalsensitivitypodcast.org/
Watch on YouTube: https://www.youtube.com/@podcastingMCS
#MCSAdvocacy #MultipleChemicalSensitivithy #MCS #InvisibleIllnessAwareness #SafeHealthcareSpaces #ChemicalIntolerance
DISCLAIMER: THIS WEBSITE DOES NOT PROVIDE MEDICAL ADVICE
The information, including but not limited to, text, graphics, images, and other material contained on this website are for informational purposes only. No material on this site 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 read on this website. No material or information provided by The Chemical Sensitivity Podcast, or its associated website is intended to be a substitute for professional medical advice, diagnosis, or treatment.
Thank you very much to the Marilyn Brachman Hoffman Foundation for its generous support of the podcast.
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[00:00:00] Aaron Goodman: You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman.
I've spoken before on the podcast about the challenges we all face when it comes to advocating for accessibility, whether at home, family, colleagues, friends, and others.
For me, lately, it's been about speaking up so I can go to Judo class with my kids. I'm not a serious Judo practitioner. I'm not that good. But over the last few years, I've learned to get over the feeling of dizziness when I somersault and breakfall. I've progressed from a white belt to a yellow belt, and if I keep going, I might reach an orange belt.
You know, the Judo community is wonderful. It's a great space for children, teenagers, parents, and adults. My kids are eight and 10, and even though they complain sometimes about going, once they're there, they smile, they exercise, and they play with others.
You know, for me though, the greatest obstacle about going — the kryptonite, as many with MCS call it — is the fragrance, the floor cleaner, the scented laundry detergent people wear. The air fills with it, and my reactions kick in when I'm home, when I'm ready to sleep.
There's tingling in my spine and my feet and ankles. My tongue swells. I get intensely thirsty. It lasts for hours, sometimes days. I get exhausted, and I have to juggle parenting, work, and trying to maintain a sense of wellbeing sometimes feels impossible.
But I keep going back to Judo a few times a week. I've told a few people at Judo about the insomnia I get when I react to fragrance. A friend notices the laundry smells too, but it doesn't bother him that much. The teacher allowed me to buy non-toxic unscented floor cleaner, but the laundry smells — what to do?
Well, last week I decided I'd have enough of reacting and suffering in silence. I had considered wearing a mask in class, but it felt too embarrassing. It's hard being the only one. But I did it, and I blocked most of the laundry smells.
Breathing through my mouth while running wasn't easy. I had to step outside once to breathe before going back in, and only one person seemed to notice. Everyone else, including the teacher, didn't really care.
Why did it take me three years to get the courage to wear a mask at Judah? Why did I care so much about appearing to be fine? You know, someone once said to me, if you needed a mobility aid, you'd use it. What's the difference?
I recently spoke with someone for the podcast, and I'm looking forward to sharing this episode with you, and they talked about the lengths that people go to, especially young people, to conceal the symptoms of chronic illnesses, including MCS.
If there were more research backing what we know — that MCS is a physiological illness, not psychological, that it can be triggered by many things, as excellent scholars have shown — maybe then I'd feel less anxious about being open about living with it.
If more people understood the harms of fragrance, of chemicals, the flaws when it comes to regulation, the role of genetics or mast cell activation syndrome, maybe I wouldn't feel so nervous about showing up with a mask on and being open about having MCS.
Everyone I've spoken with on the podcast — researchers, people who live with MCS, and many listeners — have helped inform my thinking and approach to navigating life with this condition.
I've learned helpful language. Like many of you, I have an environmental disability, a chemical injury, a chronic, invisible yet debilitating illness like millions of others. And even though we are not alone, sometimes it feels that way.
I minimize the effects of fragrance when I talk with friends and family. On public transit, I've held a scarf to my mouth to block scents, even though I would've moved away if I were alone. I remember once being with a colleague, being embarrassed about speaking openly about how much it was affecting me.
When family members visit and use scented products, despite prior requests, sometimes I hide my discomfort and suffer in silence.
I think I'm changing. I move away from triggers most of the time. I walk the dog with a mask to avoid inhaling scented laundry from neighbors. I'll wear the mask again at Judah. It's a relief. I no longer feel the need to ask people to change, and I'm letting go of shame — of being different, of being ill — and instead I'm focusing on being safe and protected.
You're listening to The Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker and researcher, but I'm also someone who's lived with multiple chemical sensitivity or MCS for years.
MCS affects millions around the world. It's a condition that makes everyday life extremely challenging and unpredictable. Fragrance, air fresheners, fresh paint, scented laundry products on someone's clothing, and a lot more can trigger exhaustion, brain fog, muscle pain, rashes, and a wide range of symptoms.
And yet, for all its impacts, MCS remains largely invisible. Doctors mostly dismiss it. Employers rarely accommodate it. Even friends and family struggle to understand.
This podcast aims to change that. We dive into the latest research, share real stories, and explore how people navigate life with an illness many refuse to see.
A note for listeners: this episode could be triggering or d. To listen to, but the purpose is to create greater awareness about healthcare invalidation, its impacts, and to advocate for change.
So like I said, in this episode, we're looking at something virtually everyone with MCS has experienced — healthcare invalidation. Far too often this illness, which affects every part of our lives, is dismissed by clinicians. We're frequently told it's not a big deal, and it's all in our heads.
Each of us has likely walked away from medical appointments deeply impacted by these upsetting moments. I received some feedback from listeners about their own experiences with healthcare invalidation, and I think you'll be able to relate to these.
This comes from Julie Bartos: I went to a doctor last year about my fragrance hypersensitivity. She suggested I need some cognitive behavior therapy.
This longer passage comes from Chris: I develop fragrance sensitivities at age 10. I discovered I was reacting to fragrance in the classroom, the teacher's cologne or aftershave, and I was moved from that advanced class to an average group.
At age 11, faced with more frequent and severe symptoms, my pediatrician talked to my parents into sending me for my first formal psychological evaluation. I presented as typical, my pediatrician rejected the findings of the evaluation she asked for. A year later, she was still telling me and my parents I had anxiety.
Sometime between age 13 and 17, I asked the family allergist about people who are allergic to everything. She told me the people who were allergic to everything were crazy.
My doctor during my late twenties and I had an endless conversation a couple times a year:
What do I have?
You have MCS, but MCS doesn't exist, so you can't have MCS, therefore you don't have MCS.
So what do I have?
Well, it's obvious you have MCS.
There is invalidation in healthcare, but that leads to invalidation all other areas of life. Without support of a doctor, without the ability to prove something, I have found people can get away with refusing to accommodate.
I received another message from listener Pauly H. Pauly writes:
In the electronic charting system of my former health network in California, MCS is miscategorized as MCSS or multiple chemical sensitivity syndrome, which is highlighted for providers in the system as a psychological stress-induced disorder.
When any medical providers in that network explored my "MCSS" diagnosis, they would be prompted to inappropriately treat me as experiencing stress-induced psychosis about chemical intolerance.
Prior to this, during the months long tilt ordeal, which caused my MCS, I was brought several times to my health network's emergency room by ambulance for chemical exposure slash chemical inhalation.
At the time, I was being exposed to fumes emerging from my neighbor's apartment around the clock because they had begun using, then producing methamphetamine throughout each day and night.
In the emergency room, I was ridiculed by nursing staff, including an emergency room doctor, patient relations, and later by my primary care physician and neurologist.
During ER visits, I was placed into the psych care isolation rooms of the ER, denied medical care. So in addition to now having MCS, I also have psychological trauma.
I tend to think that if MCS had simply been properly named and defined, I might have received the medical care I truly need it.
So this is truly a distressing account, and unfortunately, it's something that others have experienced, and I'm really sorry to hear it, and I hope that this never happens again to anyone.
Thank you for your feedback and comments.
Up until now, researchers have rarely examined the impacts of medical invalidation, and we've harbored the consequences of it on our own.
You'll hear my conversation with Allison Empo. Allison is a postdoctoral researcher at Rutgers Robert Wood Johnson Medical School in New Jersey in the United States. Allison holds a PhD and MA from Rutgers University in Health Communication.
You'll hear Allison explore what she calls an epidemic of healthcare invalidation for people with MCS and a range of illnesses, the consequences of medical dismissal and how it affects us in significant ways on a personal and human level, how people with CS, as we know, support each other largely online, and some strategies for how we can advocate for ourselves.
[00:11:36] Allyson B.: Thank you very
[00:11:36] Aaron Goodman: much for joining me. It's wonderful to connect with you and learn more about your research.
[00:11:41] Allyson B.: Hi Erin. Thank you so much for having me. I was really excited to see you reach out and, you know, excited to see that other patient communities are being represented by this work.
[00:11:52] Aaron Goodman: Yeah, I mean, medical dismissal is something that people with MCS — most of us have experienced, unfortunately — and it can be very difficult.
It'll be really interesting to hear your thoughts and your insights on this really important issue. Before we jump in, do you want to talk a little bit about your motivation for doing your research on this issue?
[00:12:15] Allyson B.: Sure. I'll say most of the work that I've done, I've started researching this kind of topic of what I call invalidation. A lot of the work has been done in the context of endometrioma.
It's a disease I'm familiar with, and I have formed partnerships, which has made research easier. But for the review that we just published, I thought it was important to have as many of these illness groups, these marginalized, essentially patient populations represented.
And the motivation really is just this is a problem. The harm needs to be laid out, plain and simple, and the hope is that it'll reach physicians to ultimately elicit change.
[00:12:59] Aaron Goodman: You'd look at a number of illnesses. Multiple chemical sensitivity is one of several. Do you want to talk about what illnesses you did look at and what they have in common?
Most listeners have multiple chemical sensitivity, and we also make a point of sharing the podcast with healthcare providers, physicians and researchers. But what do people with MCS share with other folks with illnesses when it comes to medical invalidation?
[00:13:27] Allyson B.: Yeah. So I would say that this project was interesting because I was seeing patterns just as I was doing my own research, and I was like, I should do a review on this and do it like more formally.
For the most part, these are all illnesses where there's not really a way to definitively diagnose somebody. Mm-hmm. And hence, I think perhaps greater uncertainty that can be experienced by physicians or clinicians.
And I think that we're in a medical climate where medical technology dominates. So when it comes to like taking patient's words is really where a lot of this difficulty arises in interactions.
[00:14:13] Aaron Goodman: What does medical invalidation mean and what does it look like?
[00:14:19] Allyson B.: Yeah, and really invalidation has these kind of two primary characteristics. It communicates to a patient or an individual that they're wrong in their perception, experience, interpretation of their own experiences, but then tributes that wrongness to some negative personality state or trait.
It came from the clinical psychology literature where there was emotional invalidation. And so it's like, no, you shouldn't be sad about this, or you shouldn't be upset about this. So that's telling them that they're wrong in their experiences.
And then that second part is, oh, you're just being oversensitive. Right? So there's that misattribution to these kind of negative attributes that individuals have.
And so I've tried to adapt that into the context of symptoms in the healthcare context. And that's really where we see it. But then also there's coping responses. So either patients then avoid healthcare. They either change their communication, so they might withhold certain symptoms just out of fear.
Any mental health concerns mm-hmm. may not be communicated even if it's not the cause of the symptoms. Mm-hmm. Right.
You know, there's three technically classified coping responses. The third is just trying to prove yourself valid. And I think that's mm-hmm. where we see a lot of the patient self-advocacy come in.
[00:15:51] Aaron Goodman: If we could talk about MCS for a moment. More and more people are developing the illness. In 2023, a study by Claudia Miller and Shahir Master and colleagues states that roughly 20% of people in the US self-report having multiple chemical sensitivity.
I recently spoke with a researcher in Scandinavia who said that one in 10 people in the European Union have severe and debilitating MCS, so the numbers are rising. And more and more people are experiencing medical invalidation because the medicine isn't catching up.
[00:16:28] Allyson B.: Yeah, I think there's a lot of humility that needs to be involved in saying, okay, there are limits to our medical knowledge. We wouldn't be doing research. We would know what causes cancer, right? Mm-hmm.
To say that our knowledge is complete about the human body is fallacious.
[00:16:44] Aaron Goodman: Yeah, and I wanted to ask you on that point, Allison, why do you think this is happening? And you mentioned it's happening more frequently.
We look at MCS because of a lack of training about en environmental medicine, about the harms of toxic chemicals on human health. Is it about lack of time? Pressures, a lack of empathy? Is it arrogance? What are some of the issues at play here in your view?
[00:17:09] Allyson B.: Yeah. Well, I will preface to say that I haven't done my own research on that though. That's something I would like to explore, but just from my own hunches, from my own work is that again, this, this overreliance on medical technology, and then also I think there's sociodemographic variables associated with it as well.
It's racism, sexism. A lot of the conditions are female predominant illnesses, but. And then just, I guess that lack of perhaps humility of just saying, okay, I don't know everything.
There have been so many reports published on promoting patient-centered care, better quality care in the health, in the US healthcare system. It almost seems, I don't know. I don't know if we're going backwards, but, or maybe it is just because there's more of a focus on it now, but it's just makes me question.
So yeah, I think when we think about also this algorithmic clinical reasoning that clinicians go through, like, do you have, do you experience X symptom? Yes or no? No. Go to the next question. Do you experience this? Yes. Okay. How long?
And so that doesn't allow for patients to tell their stories. And I think that's one of the best ways for diagnosis to happen is just for clinicians to sit back and listen to patients tell their stories. They'll tell them what they're looking to hear.
[00:18:36] Aaron Goodman: Just building on what you've shared. Allison, you write, this is an epidemic of medical invalidation and one in 10 women experience it. To be frank, one in 10 doesn't sound like a whole lot.
It seems like in anecdotally it's a lot more than one in 10, and it's people with MCS. Majority of people who have this illness are women, and you write, it's the fastest growing type of medical visit. The medical invalidation.
[00:19:02] Allyson B.: Yeah, no, absolutely. I think, you know, this is what happens when patients go in and I do certainly think, not that females have it worse, but just perhaps more prevalent.
Mm-hmm. Because for autoimmune conditions, those tend to be more prevalent in females and not all of those have diagnostic tests where we can just, you know, do this blood test and says, oh yes, this person has this illness.
Am I answering your question?
[00:19:31] Aaron Goodman: Yes, and I was thinking earlier, there is a self-assessment questionnaire that people with MCS can use. It's called queasy. It's available online and people can bring it into the doctor's visit.
[00:19:42] Allyson B.: Oh, that's great.
[00:19:43] Aaron Goodman: Yeah, I know, but that kind of thing. I wonder if it can have either, sometimes a positive, but perhaps negative impact too.
Are you seeing that as people become more informed through their own research, are doctors generally clinicians receptive to that or are they pushing back.
[00:20:00] Allyson B.: I think from, you know, my own research, and again, I've done primarily endometriosis. I know patients have reported going in with journal articles with even their own symptom diaries of what they've been going through.
And from those experiences, it seems like largely more yes than no, that they are averse to it. But yeah, I also am, so there was this organization, actually a society to improve diagnosis and medicine and now there are no longer, but I think they're called the community to improve diagnosis and medicine.
And there're a wonderful community. It's a bunch of physicians who genuinely care about wanting to improve diagnosis and a big something that they're aware of is the communication challenges that exist.
Mm-hmm. And among those physicians who I know and communicate with. And I don't think that like they welcome that.
Mm-hmm. But I think there's like a bias. 'Cause the physicians who wanna learn about how to improve their experiences, patients are generally gonna be the ones who are accepting. You know what I mean?
So I've seen it from both sides. So yes, I don't really know, like prevalence wise, but seeing both sides of it.
[00:21:15] Aaron Goodman: Yeah. And it goes back to the paradigm that we find ourselves facing, right? Where there's an uneven status, right? The doctor, the clinician has a ostensibly a higher status, and we as patients are meant to be subservient and listen well.
And I found myself just yesterday in the communication with a doctor and found it quite challenging because of the unwritten rules around what can and can be said, how one is supposed to interact. And I found myself often bumping into those.
You can feel it, would you cross a invisible line? And I wonder if the model is changing, if we can hope for more of a collaborative model or collaborative communication with the clinician.
[00:22:00] Allyson B.: Yeah. That's interesting that you say, and I'm just thinking of what you were saying too. Not only has there been an increase in technology and testing and all that, but patients to your point, are becoming more and more consumer mm-hmm. in the healthcare system because there is knowledge at people spending fingertips now ing landscape that I think a lot of physicians are still trying to grapple with.
Yeah. And I, I don't, so I think maybe some of it may come from like bit of a defensive. Yeah. Whether it's intent, not saying that it's intentional, but it's 'cause whoa, is this patient questioning me when, when I think most patients are genuinely just trying to engage in an honest dialogue and
[00:22:44] Aaron Goodman: yeah,
[00:22:44] Allyson B.: do what they can to get a diagnosis and find treatment strategies or method management options to help them feel better.
[00:23:03] Aaron Goodman: When a clinician dismisses or invalidates a person in that environment, what are they saying? You mentioned you.
Are they saying they don't trust the patient? They often assume that we have anxiety disorder or psychological psychiatric conditions that we may be seeking attention.
What are they, what are clinicians telling us when they dismiss us in validate us?
[00:23:19] Allyson B.: Yeah, I did look into that some, and I'm actually looking to expand and do a review on that based on all the articles I collected for the review that I just published. But yeah, there's, there's questions about misattributions of the cause of the symptoms is one of the biggest things.
And when they're attributed to internal factors such as a patient's mental health, a patient's personality, right? So having ulterior motives, whether you're trying to seek medication or attention, or trying to get out of school or work, right? So those secondary gains.
But then also that's actually something to answer a question you had asked me earlier that I didn't include, but I think that's another thing as well, is I do think MD and DO physicians need to be better trained in mental health and understand that from the American Psychiatric Association side of things, doctors can't give a diagnosis.
According to the diagnostic and statistical manual from mental disorders from the American Psychiatric Association, patients cannot be given diagnosis a mental disorder based solely on the absence of medical evidence.
Mm-hmm. I have that underlined in my version of the DSM. Right.
I think that's what happens when they don't know. Yes. But I think it happens more too, also with, not saying it doesn't happen with males, but just because females are more emotional. I think that kind of falls back to that and yeah. There's so much we don't know.
[00:24:51] Aaron Goodman: That's right. Yeah.
[00:24:52] Allyson B.: Yeah.
[00:24:52] Aaron Goodman: Yeah. And there's a lot that's un written about hysteria among women, right?
Yeah. Just that term is just so problematic, isn't it?
[00:24:59] Allyson B.: Yeah.
[00:24:59] Aaron Goodman: Yeah. And often people with MCS are misdiagnosed and told we that it's all in our heads, and we can have anxiety or be depressed. Oh, of course. Or Romania or other symptoms, but.
It could be because we breathed an air freshener or a paint or diesel fumes that triggered that. I think deeper understanding of the illness would be really beneficial for healthcare providers.
Before we talk about, I'd like to ask you about some of the positives, so it's not all doom and gloom, and I recognize this could be very triggering for people.
For listeners, I want to ask you about some of the positives that can come out of this. But before then, you mentioned some of the harms, but if we can look a little bit more perhaps of the harms, it can induce you difficult emotional states and beliefs, including shame, even suicidality.
It can lead to negative beliefs about the healthcare system or develop healthcare anxiety, even trauma. You're right, it can lead people to completely avoid seeking medical care and delaying diagnosis. Right.
We, I know someone with MCS who, you know, because of some of these issues that you write about, didn't get a cancer diagnosis till too late and it had developed and metastasized, and we could see how easily that could happen if we have trauma around going to the doctor clinician we want to stay away can lead to all kinds of serious outcomes.
What do you make of some of these harms? How do you view these?
[00:28:08] Allyson B.: The ones that really stick with me the most are suicidality, which I think maybe stems from a lot of different things, but then the healthcare related anxiety and trauma because, and then also the shame. I think a lot of them are, but there's also a lot of them that we found.
But the fact that I think we need to also focus on this is actually changing patient's behavior and that has implications for their quality of life because like you said, delayed diagnosis, delayed treatment initiation or management strategies, or just the end of this battle for recognition and validation from physicians.
So from a patient side of things, I think these emotional states can be absolutely devastating for patients, but I also wanna highlight the healthcare system avoidance or putting things off or taking breaks from care. 'Cause you need to recover or recoup from
[00:30:31] Aaron Goodman: Yeah.
[00:30:31] Allyson B.: negative. This one negative interaction that you had.
Yeah. But I think too, if we want to try to physicians that this is important for patients, we need to show this isn't just hurting patients' feelings.
Mm-hmm. This is doing damage and harm and possibly even costing the healthcare system money.
Mm-hmm. Because things maybe go undiagnosed and get worse. And so, not saying that the focus should be there, but thinking about one of our target audiences and the things that they maybe care about more if we wanna sell this to them.
I also have a background and persuasive communication. So I'm coming out a little bit, so just thinking about them as target audience. I think just really emphasizing that part maybe would resonate with them more.
And just saying, because a lot of them, like if I'm not like their therapist, but you don't need to be their therapist to show empathy, right?
All you have to say is, I believe you. That's frustrating, right? These simple phrases that don't take too long and you're not being someone's therapist, so I don't think there's that much work that needs to be done, but I think it is a skill that needs to be cultivated.
[00:30:31] Aaron Goodman: Oh, absolutely. And if we focus a bit on the positive, perhaps, yeah.
Because of these real challenges that we often face, can it lead people with contested illness, including MCS to become more advocates? We've talked about bringing scientific knowledge research to medical visits, which can have mixed effects.
But what are some perhaps strategies we can do and some positives that come out of this invalidation?
[00:30:59] Allyson B.: Yeah, I would say the biggest one is the patient self-advocacy, but I'm not hesitant, but the onus shouldn't be on patients, but at the same time, it's so if patients really wanna get better, unfortunately, but when you add the emotional toll to it and then the physical toll of their symptoms that they're experiencing, it's a lot.
And so that's why we added actually from patient feedback. 'Cause we, for this article that we published, I think there were 21 patients with all these different illnesses giving feedback on it, and they said it felt really exhausting.
But at the same time, I do think patient self-advocacy is important and being more active in consultations. Specifically asking, okay, what is your working diagnosis? Or what are the differential diagnoses?
Knowing how to maybe redirect clinicians when they're questioning or in consultations are leading patients away from that narrative that they're looking to tell.
So yeah, unfortunately I do think it's effective. 'Cause like I've heard from patients that's effective, but I don't know that all patients are in a place to do it. And I think, yeah, you don't have to get to know a place to do it, because if a patient also is depressed
[00:32:16] Aaron Goodman: mm-hmm.
[00:32:16] Allyson B.: Feeling hopeless, then they're not gonna be one of the patients who are going to be self advocating.
So what causes a person to, what causes a patient to self advocate versus just take a break from the healthcare system? So that's something that we're trying to get a steady in motion right now, is to understand what kind of predicts, like how patients respond to that, because we don't want them.
As much as I understand, even on a personal level, how avoiding the healthcare system can have at least short-term benefits.
Mm-hmm. The ultimate goal is to go in there, self-advocate, and I think also be respectful of the physicians.
Mm-hmm. Um, of their expertise as well, because they do have expertise, assuming that they do, right, that they've done training and work in a specific area.
I know a lot of communities share different physicians who have, I don't know. Is that in the MCs community as well?
[00:33:13] Aaron Goodman: It is. It is. I think a lot of people just have difficulty accessing any healthcare. Right.
[00:33:18] Allyson B.: That's another barrier too.
[00:33:19] Aaron Goodman: And we don't have choices, right? So sometimes we don't have choices. Yeah.
[00:33:23] Allyson B.: Yeah. That's something else too. And And the people who probably are suffering the most from it are those who maybe. Can't afford to go see it just because they're there.
[00:33:34] Aaron Goodman: Is that too? The
[00:33:35] Allyson B.: demographic disparities there.
[00:33:37] Aaron Goodman: Yeah. And when there are specialized clinics in environmental medicine, there are long wait times and they're only in a few geographic areas.
There are a lot of gaps in the knowledge that among clinicians and I think if we co full bring it full circle perhaps. I think the importance of research is really, I. Not only the research that you are doing, it's really vital, but also research into the conditions themselves.
And one would hope that doctors are connecting with that research so they're equipped with the knowledge when we meet with them face-to-face so we could do less of the homework for them and just get the help that we need and deserve.
[00:34:13] Allyson B.: Yeah, and even when patients aren't going in to self-advocate with a physician, just going back to your previous question, I think communities like yours and others, or for whatever illness, it's are important for patient's mental health and their sanity a little bit.
I hate to say that, but just to have one person say, I understand what that feels like. Yeah. Because you can really start doubting yourself, right? And
[00:34:41] Aaron Goodman: yeah.
[00:34:42] Allyson B.: Get you to a place where maybe you have. People who you've never met, but who are rallying for you and saying, oh, I have a note finally, my appointment's coming up next month, or whenever it is next week.
And knowing you have that support. I don't think maybe as much of a direct effect, but I think these communities are vital for patients. Survival and living with this.
[00:35:07] Aaron Goodman: That's a really great point and perhaps a great note to end on. Allison, thank you so much for taking time and sharing your really important research with us. Thank you very much.
[00:35:16] Allyson B.: Thank you. Thank you so much.
[00:35:17] Aaron Goodman: You've been listening to the Chemical Sensitivity Podcast and the host and podcast creator Aaron Goodman. The Chemical Sensitivity podcast is buy 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. Your support will help us continue making the podcast available and creating greater awareness of MCS.
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
Thanks for listening.
The Chemical Sensitivity Podcast and associated website are the work of Aaron Goodman and made possible with funds from the Maryland Brockman. Foundation supporting efforts, educated, informed physicians, scientists, and the public about multiple chemical sensitivity.
The content, opinions, finding statements and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.