[00:00:00] Aaron Goodman: You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman, host and creator of the show. I'm a longtime journalist, documentary maker, university instructor, and communication studies researcher. I've lived with Multiple Chemical Sensitivity or MCS for years. MCS is also known as Chemical Intolerance and Toxicant Induced Loss of Tolerance, or TILT, and Idiopathic Environmental Illness. The condition affects millions around the world, and the number of people with MCS is rising just about everywhere. 

Living with MCS means dealing with a range of overlapping symptoms including fatigue, shortness of breath, difficulty concentrating, muscle and joint pain, headaches, eye irritation, confusion, memory loss, rashes, and more. Trace amounts of chemicals and synthetic fragrances in household and personal care products, pesticide, paint, construction materials, cigarette smoke and more can spark a cascade of debilitating symptoms and finding accommodations can be very complicated. 

Dismissed by healthcare providers, employers, even loved ones. Many feel misunderstood isolated and invisible. And this podcast aims to change that. We delve into the latest research and speak with all kinds of people impacted by MCS. You'll gain important knowledge, a sense of validation, and learn about navigating the realities of MCS. We also explore wider issues connected to toxic chemical pollution and how individuals and communities are pushing back against it and the harms it causes. 

One of the greatest challenges for folks with MCS is not only coping with a number of challenging symptoms, but having the illness and one's experiences recognized and validated by healthcare workers, colleagues, supervisors, even loved ones. And living with an invisible illness often means the suffering we go through is just not seen or understood by others, and that can be really difficult to deal with. So that's what we're exploring on this episode of the Chemical Sensitivity Podcast. How people with invisible illnesses including MCS are often dismissed and unseen. 

You'll hear me in conversation with Melina Sherman, a visiting assistant professor at Fairfield University in Connecticut in the U.S. For years, Melina struggled to get a diagnosis for bipolar disorder, and this led her to deeply examine what it's like for all kinds of people with a wide range of invisible illnesses. 

Aaron Goodman: Melina, thank you so much for joining me on the podcast. I'm really grateful and looking forward to talking with you more about your work. 

[00:02:48] Melina S.: Yeah, thanks for having me. Happy to be here. 

[00:02:50] Aaron Goodman: Fantastic. Perhaps a good way to start would be to just ask you about your own interests in why did you write this particular essay? 

[00:03:01] Melina S.: It's a good question. I think, in part, I wrote this essay because of my own experience being diagnosed with bipolar disorder. It was such a challenge for me personally to get that recognition that I was searching for from doctors, psychiatrists, I didn't know what was really wrong with me except that I was having these mood swings, etc. 

I mean that it was really impacting my life and when I started looking online to support groups and other folks with mental illnesses. I found out that my experience was far from unique. That's so many others had also experienced what we now call medical gaslighting or not being believed when you are at the doctor's office or in front of a healthcare practitioner. It also can extend to family and friends as well. And that just, yeah, got me on a sort of career long journey to better understand why this kind of gaslighting happens. And, just spoiler, a large part of it has to do with biomedicine, rendering folks like me and our conditions invisible, now I'm very interested in how we fight back against this invisibilization. And so that's where my most recent work is really focused. 

[00:04:22] Aaron Goodman: And you write that people with invisible conditions account for the majority of illnesses. Is that right? 

[00:04:30] Melina S.: Yes, 96 percent of people living with chronic illnesses have a invisible at least one invisible disability. That's a pretty astounding statistic. 

[00:04:42] Aaron Goodman: It really is astounding. Yeah. I come across these terms a lot. Invisible illness and also contested illnesses. And I don't like the term contested or I use the term so called contested illnesses. So I was really grateful to read that you also take issue with the term contested illness. Do you want to talk a little bit about that? 

[00:05:05] Melina S.: Yeah. I definitely am not a huge fan of the contested illness sort of frame. To me, it seems to the word contested undercuts the realness of experiences of poor health, which is what folks who live with invisible or invisiblized - I prefer that term - conditions experience, and it's very real for us. 

Everything about it, the way it impacts our lives and makes living so much more difficult in so many ways is incredibly real. The consequences also, I think, of having increasingly limited access to care and the medical gaslighting and just all of the work that one has to do to fight for recognition and for a diagnosis, if that is one's goal is compounded when we use terms "contested" that sort of call into question the realness or the existence, of a particular diagnostic category or condition. 

I really prefer Joe Dumit's phrase, "illnesses you have to fight to get." I think that sort of perfectly captures the kind of ongoing struggle that folks with chronic illnesses experience as they fight for recognition and access to care. It puts the impetus on other folks to recognize us, rather than just saying well, it's contested and we don't really know and sidelining the conversation and then the responsibility becomes on the sick person or the person who's experiencing poor health to prove that they are indeed sick, which is unfair. 

[00:06:43] Aaron Goodman: Yeah. And when you talk about illnesses that you have to fight to get, I have to fight to be validated, right? Fight to have the physician recognize it. If I'm in conversation with human resources where I work, I have to fight to have my Multiple Chemical Sensitivity, chemical intolerance validated. Is that what you mean by having to fight to get the illness? 

[00:07:11] Melina S.: Yeah, I think that's exactly what I mean. It's that ongoing struggle to be seen and for your experience to be validated in so many different contexts. It's not just at the doctor's office, but like you mentioned, at work in, in circumstances where there might be legal implications. It's a fight for government aid, you know, these kinds of things in so many different domains and it, it also makes the struggle of living with that condition doubly difficult because you spend so much time and energy just trying to get the thing recognized. And get that validation from the folks who are the gatekeepers to care that you have then less time to spend actually trying to take care of yourself. It's a huge time suck. And that's part of the fight as well. Folks with conditions like yours or mine have limited resources in terms of time and energy that we can spend trying to find treatments that work or, some sort of relief. So to, the fact that we have every time we enter the doctor's office, you have to spend probably, we have a 15 minute appointment, 14 of those 15 minutes kind of proving ourselves that we are in fact there for a legitimate reason. That's that to me seems incredibly unfair and detrimental to the well being of folks living with conditions like ours. 

[00:08:37] Aaron Goodman: Melina, you write about a range of illnesses. Do you want to talk about some of those that you consider to be part of this group? 

[00:08:46] Melina S.: Definitely. Oh, gosh. Along with mental illnesses, I'd say, debilitating conditions like chronic pain, myalgic encephalomyelitis, otherwise known as chronic fatigue syndrome, fibromyalgia, chronic Lyme disease, chronic migraines, long COVID, the list goes on and on. So there, there are many conditions that I would include under this banner, but I think, maybe the easiest way to think about invisibilized illnesses are illnesses where there isn't a constant and visible reminder of an impairment or a disability. So someone may not use a walking assistive walking device or be in a wheelchair, but, deals with this condition every day regardless. So that's what I mean when I say invisible illnesses, but there are many others that I haven't mentioned as well. 

[00:09:38] Aaron Goodman: And we can put Multiple Chemical Sensitivity, you would consider that part of this category?

[00:09:43] Melina S.: Of course, yeah, definitely. 

[00:09:45] Aaron Goodman: Yeah. And you mentioned in relation with physicians, healthcare professionals, you also write about in, in personal relationships. And I was just thinking about, for example, one time I was staying at long-time friend's house and I had a reaction to something they'd served for dinner the night before. And in the morning I had trouble being alert. So I was sleeping in and their response was, I felt kind of judgment about me. That I was, being lazy or taking advantage or overstaying my welcome when I was really quite ill and even though I've known these people for a long time, there was a failure to recognize because the condition is invisible. You want to talk a little bit about in personal relationships, how this presents?

[00:10:32] Melina S.: Yeah, I think it can be really difficult for folks who don't experience poor health in a chronic way. The thought that one could become ill seemingly randomly or that health can fluctuate over time is a little bit difficult for some to comprehend I think, and that's the real tricky part of living with a chronic illness. And it's certainly the case for illnesses like, like my own, like bipolar disorder that the appearance of symptoms can come and go. And that makes it very difficult, I think, for family and friends to acknowledge that what you're experiencing is real because they first can't see it. There's no necessarily outward manifestation. Second, it is, volatile and fluctuating and not constant. I think people expect when they think about sickness that it is this sort of consistent, and highly visible thing, a clear kind of aberration from the normal that lasts for a set period of time. And then it's gone. The fact that it's never really gone for someone living with a chronic illness but, can manifest at different levels and different intensities at different moments I think makes it quite tricky in personal relationships to, get that validation and that recognition from your, one's loved ones, even though one would expect, one's loved ones to be the first advocates to show up for you. I'm deeply sorry that you have had that experience. I think it's common for so many people who live with chronic conditions to experience sort of discrimination or at the very least ignorance about their condition and that goes for relationships with loved ones as well as just friends and acquaintances. I think it happens to too many of us. 

[00:12:26] Aaron Goodman: Yeah, and I want to ask you about, illnesses that are caused by exposures to environmental toxicants and Multiple Chemical Sensitivity clearly falls into that camp. What is it about Western medicine that isn't able to recognize Multiple Chemical Sensitivity or other issues that are caused by exposures to toxicants? 

[00:12:50] Melina S.: Sure. Yeah, it's a great question. And I think there are three areas where Western biomedicine is incredibly limited in its capacity to diagnose and treat chronic conditions and invisible conditions. The first limit has to do with its emphasis on visibility, which we've already talked about a little bit. So many illnesses do not present visible symptoms. And because biomedicine has evolved as a highly visible field for which you know, evidence has to be seen and in order for something to be traced back to a singular entity or disease and then diagnosed, that's incredibly limiting for folks who obviously don't have symptoms that look like biomedicine would expect them to or wants them to in order to diagnose them. 

I think then there's also the problem of causality with illnesses like Multiple Chemical Sensitivity, where there's a lot going on and there might not be one underlying issue that is the root cause of all one's problems. That's also incredibly difficult for biomedicine to wrap its head around because of how it understands disease, what disease is, and how it functions. 

I think the third, and this is really touching on your question, is biomedicine's focus on that which is interior or inside the body. The, this idea of what I call intracorporeality, or the condition of being entirely contained within the body that excludes illnesses whose symptoms are deeply related to social and environmental factors, external to one, the limits of one's own body. 

Biomedicines, biomedicine has not historically and continues not to recognize fully what others talk about in terms of these social determinants of illness or these social and environmental factors that contribute to illness. And this is a massive shortcoming. It makes it very easily to sideline something like as a sort of non biomedical phenomenon and then makes it quite easier to just ignore.  

[00:15:08] Aaron Goodman: Right? And because, you know, when we go to the doctor there isn't a test, right? Yeah, there is some studies that show brain scans can show some, signs of MCS or inflammation. And, if there's oxidative stress, that can be measured, but it's difficult to go to a doctor and get a test that shows positive or negative. That's the issue, right? 

[00:15:29] Melina S.: Oh, yeah, that's absolutely part of the issue when the diagnostic tool sets are limited or only can measure symptoms, but can't, identify the root cause of what's happening. Also the insistence that there has to be one singular underlying root cause is part of the problem as well. And those, the treatments that are the diagnostic tools that do exist seem to anticipate certain kinds of treatments that don't always work. For folks with chronic illnesses as well, it's a namely pharmaceutical solutions that are this sort of one size fits all model of treatment that maybe work sometimes for some people in some situations, but can't adequately address the vast diversity of experiences that folks with chronic illnesses have. So that's also part of the problem. 

[00:16:23] Aaron Goodman: And are you calling for a new form or model of treatment, and is part of the problem the disease versus illness paradigm? So when we think of, maybe help us understand disease versus illness and treatment. 

[00:16:42] Melina S.: Sure. Yeah. Biomedicine is quite focused on disease and sees illness as secondary to disease. When I, and when I say disease, what I mean is a condition that can be causally associated with biomarkers that a physician or a researcher would use to trace symptoms back to a singular entity, the disease illness. From what I understand, illness is a poor experience of health. It doesn't require the same sort of causal relationship that's there in the disease models of health and illness. All it requires is that an individual experiences poor health. And that experience alone is simply just not enough for modern medicine to diagnose a patient oftentimes and experiences themselves are quite easily written off as purely psychological or it's all in your head. We've heard these things a million times. I'm sure you have. I have as well. Yeah, and so I, I think that's the basic difference is that illness is experiential and disease is defined as this very objective, factual, causal thing. 

[00:17:56] Aaron Goodman: Yes. And when we don't have the ability to get a diagnosis, right? If our illness falls into the category of contested, and we're dismissed and told, as you say, it's all in our heads, the fallout is that often we're left to find a road map for ourselves, right? And figure it out. And we do that by turning to online communities and finding people who've paved the path before us. Do you see that happening quite a bit having to find our way? Either on our own or in community?

[00:18:32] Melina S.: Absolutely. I see both. I see folks who live with complex chronic conditions going at it alone. And that's where things can get really sticky. I think there's a whole marketplace for cures on the internet that, while, can be helpful, can also be incredibly exploitative for folks who are living with these conditions. Now, it's a pretty harsh environment that's characterized by really dubitable marketing strategies and unproven cures and these kinds of things when folks are going at it alone in that context. And in that sense I worry about the potential consequences for that individuals and yeah, for anybody who's going at it alone in the online marketplace. 

But I think the online support groups, online communities that you've mentioned can be a real antidote to some of these problems. It's for one, a place where folks who experience medical gaslighting who experience epistemic injustice can find solidarity and find recognition with folks who experience similar symptoms or more and more often folks with different conditions. 

But with overlapping symptoms I think that's something that really excites me and where my sort of future research is going, is looking more deeply into online communities and the solidarities and new knowledge that's being formed when folks cross over the diagnostic category and help each other. 

And we've seen this a lot with long COVID communities. Folks with myalgic encephalomyelitis, chronic fatigue syndrome and long COVID and Parkinson's and cerebral palsy coming together to share overlapping symptoms that have ultimately produced new knowledge about things like symptom clusters that we didn't really have before and that's coming straight out of online communities and patient generated knowledge, which is very exciting. 

[00:20:30] Aaron Goodman: Patient generated knowledge. Yeah. Do you see people who have illnesses involved in research or spearheading research on their own? 

[00:20:42] Melina S.: I do, I absolutely do. I think long COVID is the clearest and most recent case where a quote unquote contested illness was made highly visible and to the point where it's actually now more and more recognized in clinical context and research context. Precisely because patients took knowledge production into their own hands. 

Patient advocates were the first to petition the World Health Organization for recognition and develop the first surveys of long COVID symptoms long before science or biomedicine had actually done any of that or not long before, but months before. 

And the first published scientific account of symptoms was written by somebody with long COVID and all patient team published the first survey that I mentioned earlier. On social media patients popularized the long COVID hashtag several months before the scientific establishment officially recognized long COVID as a scientific object. 

So that is definitely a case where patients have come forward with their own lived experience and armed with that kind of experiential knowledge. And it has been incorporated into and translated into kind of mainstream scientific and biomedical knowledge since then. And, because it's grounded and lived experience, I would hope in any case that knowledge would be more useful than biomedical research sometimes is for people living with chronic conditions, especially conditions like long COVID that have over 200 different symptoms. 

[00:22:30] Aaron Goodman: That's really powerful. That leads me to want to ask you, do you think there's value in people with Multiple Chemical Sensitivity and other so-called, to use this terrible term, contested illness, showing up, sharing our personal lived experiences online with others, developing solidarity, sharing knowledge, lobbying. Is there value in that? 

[00:22:52] Melina S.: There's so much value in that. It really can't be stated strongly enough, at least from my perspective. I think there's value in, in lived experience as its own kind of expertise, what I like to call experts of experience because it allows us to gain an insight into how an illness plays out in the kind of non-sanitized context that biomedical researchers examine illness in. 

We've been confined to understanding these things within the context of a randomized clinical trial, where a treatment matches up to a specific person and the person takes it as prescribed and it plays out step by step in this real neat, linear way, but that's not life. Life is messy. And we know that illness needs to be examined in that messier context if we're going to truly wrap our heads around it and understand it. I think that's where patients' lived experience and the experiences that are shared in online patient communities comes into play. And they have so much to teach us about the social conditions that determine illness. About the impact of social and environmental hazards on experiences of illness the differences that one's race, class, gender can play and how one experiences illness. 

There's so many things that experts of experience have to offer both others who are living with these conditions, who want to learn about how to better manage them and for the biomedical establishment, if it would accept, incorporate some of this evidence as valuable and into its procedures. 

[00:24:33] Aaron Goodman: Yeah, and I'm just taking a step back. You talked about the crossovers... I wanted to ask you when I reached out, this is the Chemical Sensitivity Podcast and, it's not your particular area of specialization, but are you fielding a lot of requests and invitations to connect from folks like me who see that your work really is so important and relevant? And yeah, what do you think the connection is from your perspective to our community? What do you make of that? When you got my invitation, what did you think? Did you think this is not relevant? Or did you feel, what was your thinking? Why did you decide to chat? 

[00:25:15] Melina S.: No, I thought that this is completely relevant because MCS is an invisibilized condition, just like so many others that I have been studying and I'm interested in. I thought it was immediately relevant in part because I see hope in crossing diagnostic categories. And I see a lot of potential there for learning about illnesses, learning new things that we didn't know before from studying illnesses and conditions that may not share the same name, but where the experience is often resembles others. Yeah, I joined exactly because of my sort of insistence that we can't be prisoner to a diagnostic category shouldn't be should fight against that. And that solidarity is one of the resources that people living with invisibilized conditions have and can use in order to advocate for better care in the future. 

[00:26:18] Aaron Goodman: Yes, I wanted to perhaps, as we aim to wrap, up if I could ask one more question. You've done a lot of research on the opioid overdose crisis and it's something that we share. I've spent a decade working with people who use drugs and working with people to help tell their own stories to challenge stigma. It's taught me really that people who use drugs and people who've lost loved ones to overdoses are also really invisiblized and silenced and marginalized. I wonder if you share that and see any parallels between these communities? 

[00:26:55] Melina S.: I definitely see parallels. My work on the opioid crisis. I wrote about it in a book that Oxford University Press published. It's called "How We Hurt: The Politics of Pain in the Opioid Epidemic." And it's really the work that got me thinking about chronicity, what it means to experience poor health in a sort of everyday way and to be never truly well. And I have a lot of empathy and compassion for folks who use drugs because I think drug use often comes from a place of pain, whether that pain be physical, emotional, spiritual, that is in many ways, a logical response to living in a really pathological world, an ailing world. I've been wanting to work on issues of drug use and unpacking the term addiction for quite a long time. It's also a term that I'm not a huge fan of just like contested illnesses, or at least I'm not a fan of the way it's become sort of criminalized and then also pathologized. 

[00:27:58] Melina S.: Yeah, but my book was really unraveling how opioids became a first line solution for different kinds of pain and how they became so interlocked and in this really deep and oftentimes toxic relationship. So I'm really unraveling kind of the institutional decisions that allowed that connection to form. From the get go and to explain how that the formation of that connection has shaped the opioid overdose crisis into what we see today, how it has led to the near fentanyl ization of opioid use where, the drugs that have been used in this crisis have shifted over time. And it that's what was really interesting to trace. So it's a little bit of a different angle than what I take now in my research, which is very people focused, people centered, but I think, you know, it was out of recognition that one of the shortcomings of that first book was that I did not talk enough to people who use drugs and people who live with chronic pain. And so I made a promise to myself when I got to the end of that book that the next book I would, I would do that. I would talk to people who know best the real experts of experience who have so much to offer science and biomedical research and policy on these issues. 

[00:29:20] 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 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. 

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