What happens when your body and the climate break down at the same time?
In this episode, Still Here co-host Miles Griffis talks to Lorraine Boissoneault, science journalist and Sick Times contributor, about her new book, Body Weather: Notes on Chronic Illness in the Anthropocene. Lorraine shares how she came to see the links between her own chronic illness and the broader climate crisis, from barometric pressure and wildfire smoke to mold and flooding, and why she believes the crises facing chronically ill people and the planet are two sides of the same coin.
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RSSLinks Mentioned:
- Buy Body Weather: Notes on Chronic Illness in the Anthropocene here or wherever you get your books
- Follow Lorraine Boissoneault on Instagram and Bluesky
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Intro
Melanie Marich: [00:00:00] Welcome to Still Here, a Long COVID news and commentary podcast from The Sick Times.
Miles Griffis: I’m Miles Griffis.
Betsy Ladyzhets: And I’m Betsy Ladyzhets. We’re the co-founders of The Sick Times.
Melanie Marich: And I’m Melanie Marich, the podcast producer for Still Here.
Miles Griffis: Many institutions are ignoring the ongoing COVID-19 pandemic and trying to erase the [00:00:30] Long COVID crisis.
Betsy Ladyzhets: But here at The Sick Times, we’re bringing you the latest news and commentary that matters to the Long COVID community,
Miles Griffis: — without pandemic denial, minimizing, or gaslighting.
Melanie Marich: “It started with clouds.” That’s how Lorraine Boissoneault’s concept of “body weather” came about: looking up at the swirling and ever-changing clouds of the Midwest. She started seeing herself in those clouds, her own body, the ways in which the weather outside differed and converged with the weather in [00:01:00] herself.
It was Lorraine’s partner who came up with the term “body weather” as a way to ask her how she was feeling that moment, that day. It’s an experience a lot of folks with chronic illness can relate to, these ebbs and flows of symptoms and flares.
They can be as mercurial as the weather itself.
Lorraine’s new book, Body Weather: Notes on Chronic Illness in the Anthropocene, is an essay collection that takes that premise and expands. She weaves this web between our bodies and the earth around us, these connections between climate [00:01:30] change and chronic illness, what it means to deal with grief and despair about problems that seem too big for any one person, but are essential for us as a people to really reckon with.
The book is out now wherever you get your books, and I’d highly recommend it. It’s beautifully written, ties together concepts I never related to each other, and gave me a really great primer on histories and sciences I didn’t understand. It also still left me in a hopeful place at the end, despite the doom and gloom of its topics.
It’s a real credit [00:02:00] to Lorraine how this book can still feel so hopeful without flinching from just how bad things are.
Miles spoke to Lorraine about her essay collection, the reporting that started it all, and how this process has changed her relationship with her body and with the world it exists within.
Here’s that conversation:
Interview with Lorraine Boissoneault
Lorraine Boissoneault: My name is Lorraine Boissoneault. I’m a writer, I write mainly nonfiction essays reporting on science and history, and I’m in the Chicago area, a neighborhood called Oak Park.
Miles Griffis: Lorraine, we are so [00:02:30] excited to have you on the show to talk about your new book, Body Weather: Notes on Chronic Illness in the Anthropocene. It is part memoir, part exploration of chronic illness, part exploration of climate change, um, and a really great history and science primer on topics that impact us every day.
Let’s start with the title. How did the concept of “body weather” come to be, and what does it mean to you?
Lorraine Boissoneault: It was a phrase that my partner coined originally [00:03:00] because when you have multiple chronic illnesses, your symptoms might fluctuate quite a lot from day to day or week to week, and so it was sort of a cheeky way of checking in on how is your body weather doing today? Also, living in the Midwest for most of my life, you know, the weather is quite variable, again, day to day, week to week, we have pretty dramatic seasonal shifts, so it just felt very fitting to describe the way my body felt in that way. [00:03:30] But then from there, it became both a metaphorical and literal way to conceptualize living with chronic illness while witnessing and undergoing the effects of climate change.
I just started seeing all of these links between how our bodies respond to the world around us, whether that is literally weather and, and temperature changes or pollution in the environment or viruses, bacteria, [00:04:00] all of the myriad things we come across. To me, that’s very similar to the way that weather is also being influenced by so many different factors all the time.
Miles Griffis: It’s such a helpful term. I feel like it gives a really nice framework for a lot of people with chronic illnesses to think about flare-ups and all these different things that come along with chronic illness. So much of your personal experience in this book will ring true with our listeners, um, and anyone who has dealt with chronic illness, [00:04:30] including stages of denial, the struggles with finding a doctor you trust, um, the feeling of, like, Whac-A-Mole when you feel like you have one chronic illness under control and then more flare up.
How did you decide to approach, to tell this story with your chronic illness through the lens of weather and climate change?
Lorraine Boissoneault: I think originally it was going back to that phrase and feeling like I didn’t want to [00:05:00] talk solely about my experience in my body without that broader context, and the environment and the weather are such omnipresent elements of our lives. And I think a lot of times they get overlooked in discussions about chronic illness, that we just don’t think about the ways that environmental pollution might be impacting people, the way wildfire smoke and air pollution has a role [00:05:30] in development or exacerbation of illnesses.
And, so being able to explore those questions helped me not feel like the center of the story quite so much. I also had not planned on writing a memoir when I started this, I was more interested in investigating the links between increasing chronic illnesses and climate change and [00:06:00] pollution and all of those things, and it just ended up feeling a little disingenuous not to include my stories in that.
But I didn’t want it to be purely a story of me. I have read many good books by people who have written just about their experience with illness, so I’m not saying that as a slam on anyone else’s narrative style. But what felt most comfortable for me in the way that I think and process my experiences is to broaden it out, to [00:06:30] have myself as part of the throughline connecting these elements, but to also try and see the bigger patterns that are happening, because I know I’m not the only one going through these kinds of experiences.
Miles Griffis: Yeah, I’m curious, uh, in this sort of reporting you did as you spoke with other people and looked beyond your own experience. How did you find that, uh, weather impacts the symptoms of people who have chronic illness? I know there’s a lot of talk within the community [00:07:00] of things like the “October slide” or, different pressure systems impacting systems, that kind of stuff, and then of course there’s also the impacts of climate change that can have on symptoms. Would you mind talking a little bit about each of those?
Lorraine Boissoneault: Yeah. So with just the basics of weather, you know, I’ve, I’ve heard so many different things. For some people, it’s big dramatic temperature shifts have an impact on pain levels or brain fog. When there’s storms that are coming [00:07:30] through, the barometric pressure changes can exacerbate symptoms. I think, for me personally, the worst weather is cold, wet weather, but not snow.
Snow is okay, but if it’s 50 [degrees] and raining, I’m miserable. Uh, and it’s so dependent on each person’s body. Some people really can’t handle a lot of sunlight. Other people, the sun is helpful and [00:08:00] can relieve symptoms. I’ve heard from a, a lot of different people, a lot of different ways that they’re impacted by the weather.
And then on the, the broader level of climate, I think we’re seeing more frequent big shifts in weather systems causing, like, heavy rain and storm systems that produce tornadoes and hurricanes, and I think those really big shifts, that’s really hard on people’s bodies [00:08:30] for many people with many different types of chronic illnesses.
And then things like wildfires. You know, Chicago is not an area that gets wildfires, but we get a lot of the smoke from Canada, so our air quality has been really terrible the last three or four summers, much worse than when I first moved here 10 years ago, because of the way the smoke drifts down from Canada over the Great Lakes region.
And, if you [00:09:00] have asthma or any sort of respiratory difficulties, wildfire smoke is terrible. I’ve heard from people with Long COVID that the wildfire smoke can really make symptoms worse. If you have rheumatic diseases like rheumatoid arthritis or psoriatic arthritis, it can cause flares of your symptoms.
So there’s all of these things happening that are bad for our bodies in a lot of different ways. And so I think that the dual [00:09:30] problems we have in the medical system and in climate conservation, all of those issues are really two sides of the same coin of people being essentially abandoned because — I didn’t even go into when natural disasters happen, disabled people are most likely to suffer from them because of difficulties in evacuating or need for access to electricity if the grid goes down, [00:10:00] things like that.
So, you know, we’re in a hard situation, I think, [as] people with different types of chronic illnesses and disabilities as climate change continues to progress.
Miles Griffis: We’ve just seen a lot of mask blocks, uh, disabled people, um, disabled groups, disabled advocacy groups, Long COVID groups, a lot of, like, sort of making these connections between climate change, um, whether it’s through masking or clean air infrastructure [00:10:30] that a lot of groups seem to be missing even in, like, climate spaces.
They’re not really fully listening to these, um, to these advocates in the ways that they’re proposing we tackle these really big problems.
In your research, in looking at how these symptoms, like, everyone is so so specific. Wildfire smoke has made my symptoms much worse [than] in the past living in the West. Did you come across any experts who could kind of explain why these [00:11:00] different factors, change our symptoms and lead to flare-ups and stuff?
Or is it just still something that’s being more and more looked at through research?
Lorraine Boissoneault: Sadly, it is yet another thing that is still being looked at in research. One of the researchers that I talked to was one of the first at the [National Institutes of Health] NIH to really investigate climate change and autoimmune diseases specifically, and he talked about how he’s been trying to push the [00:11:30] needle on this research for decades.
He was, I think, on the point of retiring when I spoke with him, and it’s just been an uphill battle. And I think some of that is lack of funding. Now we’re seeing funding cuts for so many areas of science, especially around climate change and chronic illness. Some of it is the complexity of the problem.
You know, it’s not easy to segregate out wildfire smoke from particulate matter that comes [00:12:00] from cars and diesel engines. And if there are steel mills or other industrial sources of pollution nearby, like, how do you separate those things? It’s really challenging, and that’s I think one of the main reasons that it is so hard to say exactly what each of these things are doing and how they’re affecting people’s bodies differently, especially when the illnesses themselves aren’t well enough understood.
You know, Long [00:12:30] COVID, there’s been a lot of research, but it’s still so new that there are many things we don’t know yet. Autoimmune diseases have been known for centuries, and there’s still a lot we don’t understand about them. And so it’s really tricky when you have missing pieces on both sides of the equation to say, “Ah, yes, this is doing this, and this is doing this, and here’s what we need to change.”
We know there are [00:13:00] problems, we just don’t know exactly what all is causing them.
Miles Griffis: Yeah, so sort of switching gears here, I think a lot of the emotional parts in your book, talking about sort of the grief and, you know, I think a lot of these things will resonate with our listeners who are dealing with Long COVID and other complex chronic illnesses, ’cause you don’t shy away from the profound pain and grief of being sick, as well as the grief and fear of denial of climate change that so many experience.
Miles Griffis: What do [00:13:30] you see as the relationship between these things, and how did that evolve as you were writing and reporting?
Lorraine Boissoneault: The emotional side of it was actually the last part of it to come together. As I was working on the first draft, I was kind of feeling out when I’m talking about my personal narrative of experiences with chronic illnesses, what was that emotional journey like? And I realized it was pretty similar to a lot of the [00:14:00] emotions that I have around climate change too, where, you know, the first part is denial when you first get diagnosed with something.
It’s really hard to wrap your mind around it, even if you’re not denying the reality of it, the truth of it, even if a diagnosis can feel comforting in some ways. It’s still so hard to ask what that means for your life. I think there has to be a sort of self-protective element where denial comes in for a while.[00:14:30]
It’s hopefully not where people stay, but it’s so common to start there. And I think that’s really similar with climate change, where even if you’re not denying the reality of climate change, it’s hard to face the full implications of it and not panic immediately, which is why the second part of the book is [about] fear, because when you do try and take on the scope of living with these things, [00:15:00] it’s really scary.
And I think it can feel very disempowering and, I don’t know, alarming to contemplate early death and mortality or the extinction of species or the destruction of habitats around the planet. It’s just so overwhelming, and how do you face that and not get buried in it? And I think that [00:15:30] it is just a cycle where you’re moving through these different emotions.
Like in my book, it’s denial to fear to anger to grief to radical love. And, you know, a book is a linear piece of art, but I think those stages are nonlinear. I think I’m kind of always moving in and out of them at different points about both climate change and chronic illness. And [00:16:00] the more experience you have with them, the more familiar they become.
Like, I’ve heard people talk about how the first flare is the worst flare because it’s so scary and you don’t know what to expect. You don’t know when it’s going to end, if you’re just gonna be permanently worse afterwards. And it’s the uncertainty of a lot of it, I think. But as you live with it [00:16:30] longer, it gets easier in some ways.
I don’t want to say it gets easy, but when I think about the first arthritis flare I ever had, I was in such a low place, and now when I have them, it still sucks. It’s not a good time by any means, but I have more tools for coping with it and I understand my body better. And I think similarly when I’m seeing changes in the weather and the [00:17:00] climate, I still feel all of those emotions about, like, the fear and the sadness and the grief, but I can also see the work being done that people are trying to do to change the trajectory of how these things are happening.
And even if I can’t do all of the things that I want to do — that’s another challenge with chronic illnesses and disability — you know, I’m doing what I can [00:17:30] when I can.
Miles Griffis: Well said. Lorraine, so on top of being a stellar author and an award-winning author, you are also a science journalist and a contributor to The Sick Times. You have a story coming out with us pretty soon about mold and complex chronic illness, and how it affects Long COVID and related diseases like myalgic encephalomyelitis [ME].
Can you give listeners, can you please give listeners a [00:18:00] preview of your reporting and what you found?
Lorraine Boissoneault: Yeah, so this kind of came on my radar because a friend got sick years ago from what turned out to be a black mold exposure in her apartment and has been dealing with the symptoms ever since. And in the Chicago area, one of the Great Lakes are a lot of times talked about as climate havens, which is not true.We have a lot of fresh water. That’s nice. But, one [00:18:30] of the really big problems with weather recently has been an increase in severe rain events where we just get many inches of rain all at once, and a lot of apartments are getting flooded because, you know, we have the lake, and we have the Chicago River, and we have some other rivers, so there are a lot of areas where there’s high flooding risk.
And if flooding isn’t cleaned up pretty quickly, it’s very easy to get mold. And [00:19:00] so I have been aware of it as an issue and started wondering about these connections between mold and myalgic encephalomyelitis [ME] and Long COVID, because there is such an increase in the amount of mold that people are becoming exposed to.
There’s one study I found that thinks up to 50% of homes in the U.S. have mold in them. And it’s another area where there’s not as much research [00:19:30] as we would hope. There’s been a long history of research into mold and respiratory illnesses, mold exacerbating asthma and COPD and things like that, but less on the neurological impacts and the compounding impacts for diseases like ME and Long COVID.
And there’s starting to be more of that now. And just from talking to people, there seems to be quite a lot of anecdotal evidence in the ways that mold [00:20:00] exacerbates these illnesses, or in the case of ME, can be the instigating factor in it. And it’s just another thing that we’re going to have to be dealing with more with the increase in hurricanes and flooding events and things like that.
Miles Griffis: In that reporting, did you find that… I think we’ve seen mold discussed a lot in the ME and Long COVID communities. Is it something that can be like a long-term trigger for an infection-associated chronic condition?
Or is it something that can also make symptoms worse, or is it both?
Lorraine Boissoneault: It’s both, it can definitely be a trigger, and it can make symptoms worse. And the tricky thing is what to do about it. You know, mold remediation of buildings is possible. There’s a whole industry built up around it, but not everyone can afford that. And usually, if you have mold in your home at high enough levels that is also impacting your [00:21:00] textiles, your clothes, your bedding, depending on where the mold is, if it’s one particular room or diffused throughout the space that you live in.
So it can be really complicated to deal with, and that’s not even considering, you know, like getting tested. Unless you see the black mold, then you’re like, “Oh yeah, I have mold.” But it can be hard to know if it’s even there, and there’s not a lot of resources that I’ve found [00:21:30] for getting government assistance for that kind of cleanup effort.
Miles Griffis: Yeah, an interesting part of that story that we linked to was the CORE [Cohen Center for Recovery from Complex Chronic Illness] guide from Mount Sinai, and they kind of describe as like a “multiple-hit” theory. And you described it well based off of one of the infographics, but it’s like a small snowball that like you slowly pick up more infections as you go, which can lead to, you know, worse symptoms, different illnesses, different diagnoses, et cetera.
But we’ve [00:22:00] seen, yeah, so much mold in this community, so I was really glad that you pitched us this story and we got to report it. It will be out, coming out, pretty soon. So before we wrap, Lorraine, I just wanted to ask — I know you did a bunch of reporting trips and reporting for this book. What was one of the more surprising places that it took you, and what did you find there?
Lorraine Boissoneault: I think my favorite place was going to Death Valley, where I was there for the biannual, Devils [00:22:30] Hole pupfish count, where a bunch of scientists get together from a bunch of different state and federal agencies to count this extremely endangered species of fish that live in a very, very tiny ecosystem with really extreme temperature and oxygen conditions that would kill most fishes.
And it was the first time I’d been to Death Valley, and that experience alone was incredible. And being [00:23:00] in this little tiny environment, it’s just a hole in the ground, basically. You see water for, I don’t know, 15 feet or so, and it just goes hundreds of feet down, and that’s where the fish live. And they’re tiny and cute and so inbred and so endangered.
They are — I think at the count that I was at in September 2024, there were a little over 100, and that was, [00:23:30] like, a really good high level for them to be at. They have since gone down a bit. But it was a fascinating experience also to see what that type of weather did to my own body. I really had to be careful about overheating.
I was dealing with hyperthyroid symptoms at that point, which is overactive thyroid, and that can cause difficulties with heat. So it was just being very, very careful [00:24:00] about hydration, shade, cooling off in an air-conditioned space when I needed to. And I don’t know, thinking about these little fish who are living in this environment all year round and how they’ve been going at it for thousands of years and somehow persist despite all of the human behaviors that might make it harder for them to survive, and the human behaviors that are helping keep them alive.
Miles Griffis: Yeah they are a [00:24:30] remarkable species and one of my favorite species of fish.
Lorraine Boissoneault: They’re so cool!
Miles Griffis: Is there anything else you would like to say that we did not ask, or anything you think we should know about your book?
Lorraine Boissoneault: I think the main thing is my hope for the book is just that people feel less alone in experiences that can be really isolating. Living with complex chronic illness and witnessing ecological breakdown on different [00:25:00] scales is hard. It’s hard to process and metabolize those things, and I think we need to be in community to do it.
And that was ultimately what I hoped people would take away, that we can and are building communities, and that’s the way that we get through it all together.
Miles Griffis: Well said. Well, thank you so much for joining us on Still Here. We are so glad to speak with you, and we will be looking out for your [00:25:30] reported story on mold in The Sick Times soon.
Lorraine Boissoneault: Yeah. Thank you so much for having me. It’s been a delight.
Melanie Marich: Lorraine Boissoneault’s book, Body Weather: Notes on Chronic Illness in the Anthropocene, is available wherever you get your books. And as always, links will be in the episode description.
Research Updates
Miles: This week in research, we are looking at three different studies. The first is a new study that found a link between Long COVID and problems with blood vessel function, and those problems may affect the brain. [00:26:00] Researchers found significantly elevated levels of biomarkers tied to the inner lining of blood vessels, or the endothelium.
Those elevated levels were also connected to lower scores on blood tests of verbal fluency and learning. In other words, blood vessel problems may be connected to how the brain functions. The researchers plan to keep following the same group of participants over time.
Their goal is to find treatment targets for Long COVID that focus on blood vessel health.
Next, [00:26:30] a small study out of Jamaica found that nearly half of the children involved meet the criteria for Long COVID. This was after they had a confirmed SARS-CoV-2 infection.
The study, published in the Pediatric Infectious Disease Journal, included 74 participants, all under the age of 16. Nearly a third of those children developed a condition called multisystem inflammatory syndrome, or MIS-C. MIS-C is a serious condition that [00:27:00] causes severe inflammation throughout the body.
The researchers concluded that these numbers point to a need for better care and testing in places with limited medical resources.
And lastly, a clinical trial looking at a potential Long COVID treatment has been updated. The trial is testing a drug called rapamycin, which is also used in some cancer treatments. The update means that participants who were given a placebo during the study will now have the chance to try the actual drug.This type of update is called an open [00:27:30] label extension. The trial is currently recruiting in New York and is looking to enroll 80 participants.
Outro
Betsy Ladyzhets: That’s all for this week’s episode.
Miles Griffis: In the meantime, we’ll continue reporting the information that you need.
Betsy Ladyzhets: Solidarity with everyone still here.
Melanie Marich: This podcast and The Sick Times are supported by you. You can help us keep this work going by donating on our website. Still Here is a production of The Sick Times, a nonprofit newsroom chronicling the ongoing Long COVID crisis.
Our theme song for this episode is The Rude [00:28:00] Mechanical Orchestra’s rendition of “Which Side Are You On?,” Originally by Florence Reece. I’m Melanie Marich, and I produced this episode. Our engagement editor is Heather Hogan. Sophie Dimitriou designed our podcast cover art, and Miles Griffis and Betsy Ladyzhets are your co-hosts and The Sick Times co-founders.
Thanks for listening.
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