The Chemical Sensitivity Podcast

Youth, Chronic Illness, & MCS: Imogen Harper, Ph.D.

The Chemical Sensitivity Podcast Episode 86

In this episode of The Chemical Sensitivity Podcast, we’re exploring youth, chronic illness, and MCS. You'll hear Aaron Goodman speaking with Imogen Harper, Ph.D., a postdoctoral research associate at the University of Sydney in Australia. She explores how:

·       Diagnosis of illnesses like MCS in youth is often complex and requires adults noticing symptoms and advocating. 

·       Parents and caregivers can play a crucial in navigating medical systems and ensuring that their child’s needs are taken seriously.

·       Illnesses like MCS affect young people’s identity, relationships, and sense of independence. 

·       Youth and older people with chronic illnesses often deal with anxiety, isolation, stigma, and the challenge of staying connected with others. 

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If you would like to share your experiences or feedback, email aaron@chemicalsensitivitypodcast or comment on social media.

#MultipleChemicalSensitivity #MCS #MCSAdvocacy #InvisibleIllnessAwareness #SafeHealthcareSpaces #ChemicalIntolerance #EnvironmentalDisability

Links:

Imogen's 2024 paper:
"Chronic Concealment and Awareness in the Affective Worlds of Young People Living with Chronic Illness."
https://journals.sagepub.com/doi/full/10.1177/10497323241304571

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Aaron Goodman: You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. When I was young and living with my family of origin, my father had a joke. If ever someone forgot something, he often said, “You did an Aaron.” In other words, as a child and teenager, I was the model of absent-mindedness. My older sibling called me spaced out at the dinner table. When I think about it now, I know what they were picking up on. Sometimes, my cognition slowed down. I didn't feel like myself. Had my father washed the dishes in the sink with scented soap? Was there something in the food he put on the table? A preservative or chemical.
I had Multiple Chemical Sensitivity or MCS. I was reacting to toxic chemicals in our home, in the cleaning products and food. I can recall the mental weight, the change in mood, the difficulty concentrating from an early age.
In math class, I struggled to understand the equations and everyone else seemed to get it. Was it the teacher's perfume, the laundry products? Students used fragrance on the bus on the way to school that made it difficult for me to concentrate.
My daughter is almost nine and gets headaches at school. I suspect it's from fragrance in the classroom, and I've asked the school if they can help and it seems to have improved, but for months, the impact on my daughter was significant.
It's every parent's fear that the MCS we live with is experienced by our children. There's so much more in terms of toxins that we can't protect them from outside the home. Most people with MCS are older, but young people can and do develop MCS.
I've spoken with parents who do all they can to help their kids navigate life with this condition. They bring so much care and attention to their children. It takes persistent attention to figure it out. My parents were preoccupied and didn't pick up on the signs, but the sooner we can figure out what's going on in our health, the more life I think we can have. We can learn about our triggers and how best to avoid them.
For much of my life, I simply didn't feel well and didn't know what was going on. Adults have a hard time understanding it and figuring it out. There's simply not enough information about MCS, and for young people it must be even harder to understand. I've spoken with parents whose children with MCS have had to fight with the education system, governments, and courts to help their kids have access to scent- and toxin-free schools.
I've witnessed how consuming these battles can be. There are no quick fixes and it can take years, and sometimes the outcomes are not what parents and children hope for. The support from medical establishments and schools, principals, teachers, administrators, and fellow parents can be lacking. Young people with MCS are forced to bear the burden of chronic illness, and one that is looked at with skepticism.
Younger folks deserve better. The impacts of stigma and healthcare and validation cannot be underestimated. I hope wider society listens to us and to young people. We have so much to learn from them.
Imagine the gift it would be if people in positions of power, our neighbors, our fellow community members, did things—relatively easy things—that made us feel safe, and that MCS isn't our problem alone.
You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. I'm a journalist, documentary maker, and researcher, and I'm someone who's lived with Multiple Chemical Sensitivity 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. In this episode, I'm speaking with Dr. Imogen Harper, a postdoctoral research associate at the University of Sydney in Australia.
Her research focuses on the experiences of youth with chronic illnesses like MCS. You'll hear Dr. Harper explore how the significant challenges of getting a diagnosis for illnesses like MCS create major hurdles for youth, how youth with invisible illnesses have to face the unpredictability of everyday life, along with society's expectations that younger people be healthy, and they have to face stigma.
She talks about the importance of self-care, finding support from others online, and choosing the right time to disclose illness to others.
Imogen, thank you so much for joining me. It's great to connect with you and looking forward to learning more about your research.


[00:05:43] Imogen Harper: Thank you for having me.


[00:05:45] Aaron Goodman: It's a real pleasure. Before we jump in, would you like to perhaps introduce yourself and, um, perhaps talk a little bit about your motivation for exploring this really important angle or element of research.


[00:05:59] Imogen Harper: I'm currently a postdoctoral research associate at the University of Sydney. I would say that my previous research and also my current research is broadly situated in the sociology of health and illness, but taking a lot of inspiration in particular from disability studies as a discipline. And so I like to think about the ways in which power structures, social structures, discourses around illness and health, around youth, about what counts as knowledge, whether that's knowledge in medical settings or other settings, how those structures interact with individuals’ experiences. And so finding a way to tell stories and highlight those stories, but recognizing that those stories can also tell us really important things about the ways in which our society and our cultures operate. So that's my research orientation very broadly.
For my PhD, I specifically conducted a study into young people's experiences of chronic illness. So I interviewed just over 30 people aged between 19 and 29 who were living with a variety of physical chronic illnesses, often experiencing significant levels of mental distress along with that, and that study was trying to contribute to a conversation about the ways in which our expectations around what illness looks like affects people who are actually living with illness day to day. And what I argue is that our expectations of illness are often not aligned with what people experience. And that this situation makes the experience of illness a lot harder when you are trying to navigate people's expectations, schools’ expectations, family expectations, friends’ expectations. And so that was the project.
I fell into it a bit. I've always really liked research and writing and I found myself at a bit of a loss in 2020 and 2021 about what I wanted to do. And that was a moment of reflection for me on what at the time was quite a significant experience of chronic illness that largely centered around really serious fatigue. And it just dawned on me slowly and then all at once that it was really hard to find writing that explained that experience. It was really hard for me to make sense of my own experience and that a lot of the things out there were not focused, first of all, on young people and, second of all, on these experiences of illness that aren't very well understood — whether that's because you can't get a diagnosis at all or because you can get a diagnosis, but the diagnosis doesn't actually come with many good treatment options or much explanatory power.
I can explain that now. I think at the time I actually wasn't super clear on that relationship between what I was going through and the PhD that I wanted to do. But now, being able to look back on the PhD I did, I do think it's important to recognize the very personal genesis of my research interests.


[00:09:20] Aaron Goodman: And you're very accomplished. And you are quite young. So you were technically in your youth at that time in 2021, 22, I imagine. And what kind of age group, when we talk about youth, what kind of age are we talking about?


[00:09:35] Imogen Harper: The constraints of research are you need to put certain parameters on your research. So for ethical reasons, it's easier to interview people who are over 18, and then I ended up capping my age bracket at 30. A lot of the research is around that experience of what might be classed in sort of medical circles as like a deteriorating body.


Part of my research ended up also focusing a lot on stories that I heard about people, particularly at school, not being able to describe their experiences. And so I do think there are specific elements of youth both before 18, when you might be dependent on parents or carers to, for instance, pay for your medical care or advocate for you in a medical setting, and then also specific experiences for youth that might come with trying to pursue further education, not having a stable career, possibly still living with your parents. And those experiences increasingly extend well into your thirties if not beyond.


[00:10:36] Aaron Goodman: You didn't deliberately or specifically seek out or intend to focus on people with Multiple Chemical Sensitivity. I don't know if anybody you met had symptoms that fall under the umbrella of MCS. Why did you say yes to speaking on the podcast? Because you're not an MCS specialist?


[00:10:52] Imogen Harper: Well, yeah, I was really excited to speak to you, and I always feel very grateful and privileged to share my research. And if one person listens to this and finds it interesting or feels a sense of connection, that would mean a great deal to me. And I think in a sort of academic sense, I'm quite interested in experiences of illness that, like I said, aren't recognized, and some of that lack of recognition comes from a diagnosis not existing or not being taken seriously. Some of it comes from difficulties getting that diagnosis. Some of it comes from the way in which diagnoses are talked about in popular pilots in a way that is extremely stigmatizing and unfair to people who live with conditions like MCS and their loved ones.
And I also think it's important that we talk about experiences of illness as exactly that — experiences of illness — where there might be different diagnostic categories, but thinking about what is shared. And I think sometimes in an activist sense, the kind of claims and demands that people make can be shut down by suggesting that it's just a very small portion of the population that cares about this. But actually, if we say things like: an extremely common experience in healthcare is to not be listened to. Sometimes that happens with diagnoses like MCS. Sometimes it happens with diagnoses like chronic fatigue. But actually it also happens with diagnoses that are, you know, believable and well established.


[00:12:30] Aaron Goodman: And we could talk a little bit more about contested illnesses and invisible illnesses like MCS. And you write there are two types of invisibility for people who are ill. First of all, the illness can't necessarily be seen. Sometimes we develop rashes, but mostly the symptoms are not visible to others. And then, as you're referring to, the healthcare system often invalidates us and also society's expectations invalidate us. So there's two kinds of invisibility.


[00:12:59] Imogen Harper: Yeah, absolutely. And I'm really glad that you mentioned that about rashes as well, because I think sometimes we refer to conditions as invisible. And what we mean is that people refuse to see them. It's, again, we have this image of what a sick person looks like, and that is the image that should be disrupted, as well as recognizing that illnesses can be invisible in a variety of different ways. And I think that it's important to hold both of those types of invisibility in mind — the sort of physical invisibility, and then also the way in which people and their experiences are erased in different settings — because it helps explain partly why that experience of being made invisible, being made unheard, being dismissed can be so damaging. Because you're told in all these different ways that your experiences don't count. Your experiences aren't real. Your experiences aren't worthy of attention and recognition.


[00:14:02] Aaron Goodman: You quote a few scholars who write, “Not only do biomedical models fail to offer understandable diagnostic, symptomatic, and causative vocabulary, but chronic suffering also can create a sense of prolonged liminality and loneliness along with a self-perpetuating cycle of withdrawal, entrapment, and invisibility.” So I think a lot of people with MCS and young people will understand that kind of withdrawal that can stem from the difficulties of the symptoms and also the way we're made to feel invisible.


[00:14:40] Imogen Harper: I think, talking to people, a big thing that is missed sometimes — intentionally missed by people who don't wanna confront it — is the effort it takes to not only advocate for yourself in a healthcare setting, but advocate for yourself in interpersonal situations. And this requirement to really vulnerably and explicitly link that to your illness and justify the fact that you might need accommodations or you might need a quiet night in or you might need to look after yourself in whatever way you do. And doing that all the time is exhausting. And so no wonder, especially when people are at their sort of physically most vulnerable or insecure, they can't do it. And then that's a justification for further isolating people.


[00:15:28] Aaron Goodman: And particularly for youth, the demographic that you looked at, it seems like it's asking a lot to ask young people or require young people to be out with their illness. And I'm a lot older but I still have difficulty advocating for myself. That's something that gets a little bit easier over years, but what kind of difficulties do young people face? You mentioned asking for accommodation, becoming advocates.


[00:15:54] Imogen Harper: I think for young people there are at least two big things going on. One is, as you said, that life experience sort of situation. They may be less practiced in advocating for themself. They might just know less about the way the healthcare system works or the way accommodation systems work. On top of that, young people are less likely to be believed. There's a lot of stigma — stigma about young people being dramatic. There's maybe assumptions about the fact that what young people are going through is more likely to be a mental health issue rather than a physical health issue. So they're dealing with that kind of social silencing on top of the fact that they're just young and it might be hard to advocate for themselves. And people might be expecting a young person to not need. So the expectation is that young people are healthy and physically fit. And I hear people say all the time things like, “You turn 30, you turn 40, and suddenly your body starts hurting.” And for someone whose body has hurt their whole life, those kinds of things build up as a reason to not speak about what is an everyday reality of illness.
And so I see that as the sort of social and political setting. On top of that, young people are in very practical situations that make it harder to speak. So for instance, if they are at school, there's a huge amount of pressure to fit in. There might be teachers that they need to impress. If they've just got a new job and they're the sort of youngest person in the workplace, that's a very practical pressure to not draw attention to themselves. And again, to not lean into the stereotypes about young people, for instance, not being willing to work hard or being dramatic in some way. And so I think that the structures that young people find themselves in, which also include things like, for instance, economic insecurity, feed off those social and political structures and together can make it extremely difficult.


[00:18:02] Aaron Goodman: Yeah. And you write about the many ways that young people are impacted. Their lives can become very uncertain, unpredictable, as you say, and it disrupts life. And management can become a really critical part of life going forward. It can affect the way young people view themselves, their visions for the future, their sense of self-worth, their self-confidence. Having to live with an illness in a world that often doesn't support them and even bars them from participating. So there's so many ways that illness, and particularly contested illness, can have a significant impact on a young person's life.


[00:18:41] Imogen Harper: And again, those things compound. So in a very real sense, not being able to work or needing to spend a lot of money on medical care has lasting repercussions along with the repercussions of being sick. Likewise, early experiences of friendships that, for instance, deteriorate at the point someone becomes ill. Of course, that sets you up to feel really insecure about relationships. Hurt from the world is a very real experience and can start at a very young age.


[00:19:12] Aaron Goodman: You write in a very compelling way about what society could learn from youth who are ill. And perhaps I'll read a quote from Charlotte Caron, and she writes, “Temporarily able-bodied communities have so much to learn from those of us who live with chronic illnesses. We gain insights from the diversity of our bodily and mental experiences when we are in communities that allow us to speak the truth about our lives, that enable us to participate fully and freely and let us know we are accepted unconditionally. I would underline these words: compassion and solidarity are essential. Pity is not. Helpful in a world that focuses on power, prestige, and acquisition of goods, learning how to live with loss, with chronic illness, and with the results of shaming are needed for healthy and inclusive communities.” Young people living with chronic illness have a lot to teach us. Don't they?


[00:20:06] Imogen Harper: I think so. Yeah. It's interesting that a cohort that has so much to teach us is also so silenced, and I wonder what is the threat of people who, from a young age, have to confront the inherent vulnerability of human existence, who have to learn about caring for themselves and others, who often get to know themselves really well because of the way you have to be in touch with your body and mind and the environment when you're ill.


[00:20:32] Aaron Goodman: You mentioned self-care and you write about the importance of self-care for young people acknowledging the illness and its impacts even when so many so-called experts or people meant to provide care do not.


[00:20:46] Imogen Harper: There's, in some circles, quite a commercialized view of self-care, but I think to a lot of people who are sick, there's also this other element of self-care, which is about really — for survival — being in touch with yourself and your capacity and learning not just how to ask for help, but who it's safe to ask for help about. For me, I've learned a lot from reading in particular Black feminist literature, which really birthed self-care before it became this commercialized product, where people such as Audre Lorde write about what it means to care for yourself when society won't care for you. And the fact that it's an act of resistance. And I think that places that tell you to burn out or to expose yourself to things that aren't safe or to prioritize the convenience of others over the safety of your own body — refusing that is an extremely powerful gesture.


[00:21:48] Aaron Goodman: And I remember speaking with a young person on this podcast, Daniel Slavia, who's lived with severe Multiple Chemical Sensitivity and other illnesses for years. He can sometimes hardly believe that it's happening to him because he calls himself a universal reactor. He reacts to everything, and he's been homeless, essentially living in a vehicle for many years. And I find that too — it's sometimes hard to really acknowledge the severity of a reaction to something that a lot of people seem to be okay with. It doesn't impact them the same way. Although we know millions of people have MCS. So could you talk a little about that act of acknowledging that this is real for myself? And does that in itself take a lot of strength for young people?


[00:22:34] Imogen Harper: Absolutely. I was actually talking to a friend last night about how it can feel like the hardest thing in the world. Like sometimes it can feel easier to just believe what everyone else is saying, but to acknowledge the truth of your own reality is something that is difficult and is something that is an extremely courageous choice in the face of people trying to deny your experiences. And I do think that is a difficult thing to do, but it's an important thing to do and it's a courageous thing to do, and it's something that helps, hopefully, lead the way for others to do it, whether that's in relation to illness or whether that's in relation to other things. It's a powerful act to sit with your own reality.
And saying all of that, part of that reality is also that confusion at the fact that this has happened. And I think again, one of the ways in which illness experiences can be made invisible is by people not being willing to sit with uncertainty. And so I think allowing people and recognizing that people can be sure that their experience of illness exists and yet have so many questions about what is going on and why it is happening to them and not being sure what tomorrow looks like — holding both of those things is also really important.


[00:24:02] Aaron Goodman: As we're talking, I'm imagining myself as a younger person. If I had the opportunity to speak with you, it would've been so helpful. And it's really moving to hear you talk about this — a lot of aha moments. Do you want to talk a little bit about, Imogen, the concealment? Is this something that you find that young people are often engaging in — concealing their illnesses, particularly when it comes to contested illnesses like MCS?


[00:24:30] Imogen Harper: Absolutely. And putting in an extraordinary amount of effort into concealing their illness. And I think, similarly to how we were talking about the different meanings of invisibility in relation to illness, there are also different meanings of concealment. So I think, particularly with contested conditions like MCS, if you are around someone who you don't trust to believe in that diagnosis or believe in your experience, you are having to conceal so much. You are having to not only conceal that diagnosis, but you are having to conceal likely really tough experiences of getting that diagnosis — time, experiences of researching that diagnosis and researching and symptom tracking your own way to manage that condition. And then you're having to conceal the impacts that illness is having on you every day.
And what I found in my research is that even if people manage to be open about some aspect of that — so for instance, tell people that they have a diagnosis or tell people that they're pursuing a diagnosis — that doesn't necessarily mean that they are not having to think every day about what it is they want to reveal and what it is that they want to conceal. And particularly for the young people who I speak to, in social settings with other young people, there is a huge amount of, maybe self-imposed or maybe socially imposed, pressure to not speak about the impact that illness is having right in that moment. So for instance, if you are out with friends, not saying “I'm really tired, I need to sit down,” or not saying “I'm in a lot of pain, can we walk slower?” And so even if your friends might know about your diagnosis, there can still be a lot of concealment going on when you're trying to manage how people perceive that illness.


[00:26:26] Aaron Goodman: Reminds me of a time I was with a colleague on public transit, on a train — a commuter train — and I had to cover my mouth because of the fragrance. And I hadn't really told her the severity of my chemical sensitivity. And I could see her eyes, and I didn't want to move to the other car because this is the kind of thing we deal with all the time. We're conscious of how people are thinking of us and we're concealing — I'm concealing. A lot of us are. And I wasn't a youth at that time. So for youth it must be extra difficult.


[00:26:58] Imogen Harper: Yeah. I don't wanna make an assessment of who has it more or less difficult, but I do think there are elements of being young that affect young people in particular ways. And I think part of what I was hearing in that story is pressure to not make illness disruptive. And when you are young, there are a lot of things going on that you don't want to disrupt. Sometimes that's social, sometimes it's institutional, sometimes it's others’ opinions of you. And so I think negotiating that while you are already in this identity that is maybe seen as a liability in certain circumstances is a really big pressure.


[00:27:43] Aaron Goodman: We've talked a lot about the challenges. Do you want to talk a little bit about some of the positives or the advocacy or the community building that happens often in online spaces for people with MCS and other illnesses? Is that something youth are really engaging in? I don't see a lot of young people with MCS in Facebook groups, et cetera, that I am part of, but they must be out there. Are any of them social influencers when it comes to creating a path or creating awareness and again, connecting with folks?


[00:28:12] Imogen Harper: Yeah, I think the online space is really interesting and it's quite hard to get a grip on it because there are so many different elements and I think slightly different people are in slightly different areas.


[00:28:25] Aaron Goodman: Yeah. Yeah.


[00:28:27] Imogen Harper: A lot of the young people I spoke to had maybe looked at Facebook or maybe not really. To just talk specifically about social media, I think for me, I'm most familiar with Instagram, and I know there's also a lot of content on TikTok that is both very informative and also very community-oriented and very activist-oriented. Some of that is around specific conditions, but some of it is also spaces that, like I said earlier, bring together people with chronic illnesses and disabilities and talk about that shared struggle of living or with minds that are not seen as the norm and are not recognized as a whole experience.
I think that there probably are a lot of young people who get a lot from those spaces. Some of those spaces are almost entirely constructed around humor and memes about being chronically ill. But I think that is also really powerful, again, as a way of resisting these narratives of pity and despair, saying, you know, like, no, I have these shared jokes with people throughout the world and we get it and maybe you don't get it, but this is a really funny thing that we can chat about. That sort of community building is really important.
That being said, it's not always easy to find those places, and I think, again, recognizing that a lot of work goes into finding spaces that are safe and also a lot of work is done by the people who run those spaces to keep them safe and informative. So I think that's something that the online world can do really well. I also think in the day-to-day, the young people who I spoke to, when they had found people who they could speak to about their illness experience, the level of connection that came with that, whether that was another person who was ill who also hadn't previously had someone to talk to, or whether it was a person who was going through different struggles and there was just this shared sense of disconnection or shared sense of fear or shared sense of growth, that can lead to really positive experiences and a really deep understanding and practice of empathy, which offers a lot to both relationships and to the world.


[00:30:57] Aaron Goodman: Do you want to talk perhaps a bit about either at the onset of illness or even further down the road, what do youth need? And maybe if we are allies or people in their lives—parents or friends, loved ones, teachers, and others—what are their needs and what can we do to support?


[00:31:16] Imogen Harper: Yeah. That's a really important question. A lot of young people who I spoke to, certainly the moment where they got a diagnosis or decided that they thought they probably had a diagnosis, that moment came a lot after the moment that they suspected they were sick, and it also came a lot after the moment that they now look back and realize they might have been getting sick.
We should be thinking about educating all children and teenagers with a vocabulary to describe physical and mental symptoms in a way that helps them make sense of their experiences to themselves and also helps them to seek help. So I think, for instance, parents taking physical symptoms of illness really seriously, helping kids to explore what it is that they might be feeling, trying to help them pay attention to if symptoms are coming up again and again, or if symptoms aren't really responding to the kind of treatments you might expect them to respond to.
I think that's something that we can do for all children to just help their literacy about their physical health and help their connection with their own body, which will serve them well, whether or not they develop a chronic illness. But especially for young people who are thinking, “Oh, like, I might be ill, something's not right.” Really going with them on the journey of explaining that, and then helping them advocate, for instance, in healthcare settings if they're seeking treatment, is something that's really important because that's not easy. And parents, even when they do their absolute best to get taken on that journey, often are not believed.
So having a parent or another adult sitting there and saying, “No, I believe you,” is something that's extremely important for young people. If we think about what young people need when they are definitely sick, I think recognizing the ongoing impacts of those emotional experiences is something that parents and other people in young people's lives should be aware of. If, for example, you've gone through a process of not being believed by a lot of doctors, it's really important that other people are very clear about believing your symptoms because you have that history of being disbelieved.
Keeping that history in mind, of the quite extreme trauma that can be associated with medical systems, is an important element of emotional support. Another thing I consistently heard from young people is having people in their lives who can keep in the back of their head that this young person is sick and not always draw attention to it, but always be ready to step in and offer support if that's needed. Because, as we've talked about, advocacy is a very high bar. Trying to strike that balance of being a safe person, stepping up if it might be needed, but also not taking away the control of a young person in that situation, is a really good place to start.


[00:34:59] Aaron Goodman: Very interesting and very moving, very powerful, what you're sharing. Last, perhaps for me, I talk to parents of young people with MCS, and that is also very moving to hear them paying attention, being mindful, being present, and picking up on the clues, which are sometimes very subtle, and really believing their children and being that safe person. There are a lot of parents doing fantastic jobs at that, and that's incredible because the pressures that parents are facing these days are mounting. So to take that time, effort, energy, and care to do that is commendable.


[00:35:34] Imogen Harper: Absolutely. It's commendable. And parents are also in the situation of having not been taught how to do this. All of the barriers we've been talking about apply to parents. Absolutely. On top of that, it's their kid. And that's terrifying, being in a situation where you are trying so hard to help with very little structural support, very little emotional support, if you're dealing with, say, extended family or coworkers or whoever it is who don't understand.
So I think while this conversation between us has focused on young people, that lens of thinking about the way in which structurally things are made hard for people and how that impacts individual experiences—parents, carers, loved ones—impacts them in ways which are not talked about enough. I know I'll tell people about my research and a lot of people say, “I have a kid who's in that situation,” or sometimes it's a spouse or a sibling, and they tell me these stories of not knowing what to do, but at the same time doing amazing feats of care, advocacy, and support. That's a really important thing to acknowledge. Thank you.


[00:36:59] Aaron Goodman: You've been listening to The Chemical Sensitivity Podcast. I'm the host and podcast creator, Aaron Goodman. The Chemical Sensitivity Podcast is by and for the MCS community. The podcast is generously supported by the Marilyn Brockman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit chemicalsensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS.
To learn more about the Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, X, Instagram, Blue Sky, and TikTok. And as always, you can reach me at aaron@chemicalsensitivitypodcast.org. Thanks for listening. The Chemical Sensitivity Podcast and its associated website are the work VA Goodman 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.
The content, opinions, findings, statements, and recommendations expressed in this Chemical Sensitivity Podcast and associated website do not necessarily reflect the views and opinions of its sponsors.