MCS & Long COVID - Shared Struggles, Stigma, & Endurance: Deborah Lupton, PhD

Long COVID has pushed millions into a reality people with Multiple Chemical Sensitivity (MCS) have faced for decades: severe symptoms, disbelief, and no clear diagnosis.

This episode of The Chemical Sensitivity Podcast explores what these conditions share:

Medical dismissal.

Stigma and social isolation.

And epistemic injustice—when patients’ knowledge of their own bodies is questioned or ignored.

Aaron Goodman speaks with Professor Deborah Lupton, a leading sociologist of health and medicine at the University of New South Wales in Sydney, Australia, and editor of the recent book, Long COVID and Society: International Perspectives.

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Please share your experiences with MCS, Long COVID, or about anything you hear on the podcast.

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Transcript

[00:00:00] Aaron Goodman: You're listening to the Chemical Sensitivity Podcast. I'm Aaron Goodman. Long COVID has brought millions of people into a reality that many living with multiple chemical sensitivity or MCS already know well debilitating symptoms, disbelief, difficulty getting a diagnosis, be told the illness is psychological, and the toll of isolation, stigma, and strained relationships at the same time.

Many people with Long COVID are organizing in unprecedented ways, tracking symptoms, building communities, and pushing for recognition and research. In this episode, we explore what people with MCS and Long COVID share contested diagnoses, medical dismissal, and what scholars call epistemic injustice—when people's knowledge of their own bodies is questioned or ignored.

My guest is [00:01:00] Professor Deborah Lupton, a leading sociologist of health and medicine at the University of New South Wales in Sydney, Australia, and editor of the recent book, Long COVID and Society: International Perspectives. Please check out and share a link for the podcast's new webpage. It's listen.chemicalsensitivitypodcast.org.

It's easy to share with anyone in your life who's interested in learning more about MCS, and please subscribe to the podcast wherever you get your podcasts. To learn more, follow the Chemical Sensitivity Podcast on YouTube, Facebook X, Instagram Blue Sky. And TikTok, and you can reach me at aaron@chemicalsensitivitypodcast.org.

Thanks for listening, professor Lupton, thanks so much for joining me. 

Deborah Lupton: Great to be here, Aaron. [00:02:00]

Aaron Goodman: Would you like to briefly introduce yourself to listeners? 

Deborah Lupton: Yeah, sure. So my name's Deborah Lupton. I'm a professor at the University of New South Wales in Sydney, Australia, and I am a health sociologist. So. I do a lot of research into the social aspects of health experiences, experience of medicine and healthcare, or experiences of illness, and I also have a public health degree, a master of public health.

[00:02:31] So I have some training in things like epidemiology and health promotion and health economics and things like. 

Aaron Goodman: And why does Long COVID interest you? You could have chosen to look at anything I imagine, but why have you chosen to focus on Long COVID in such an in-depth way? 

Deborah Lupton: Well, from the time that the COVID pandemic became known to the world in early 2020, I actually started writing [00:03:00] about it and mapping out a research program.

For doing research into COVID because I could see quite early on as early as March, 2020 that it was going to be a devastating illness around the world. And I'd actually done a fair bit of research back in the early days of the H aids. Pandemic writing about the social aspects of that pandemic. So I already had a background in writing about the social aspects of pandemics, and that meant that I was quite quickly able to see, well, you know, this is a.

A really impactful disease event. I was, you know, noticing what was happening in different countries around the world in terms of different policies about how to manage the, the spread of the COVID virus. I started doing research about it from very early on, and [00:04:00] of course that. So I've, you know, I've written a few books, quite a few journal articles about the social aspects of COVID.

And so when people started talking about long COVID or, or long hauler COVID, again, it was quite early on in the pandemic when people just, every day people started noticing that they just weren't recovering fully from their first infections from COVID. I also, I. Noticed that and started seeing what they were writing about and social media, particularly on Twitter, which I was on quite a lot back then.

Twitter in the early years of the pandemic was actually a really great way to share information about both COVID and Long COVID. Quite early on the pandemic, I noticed patients talking about. On Twitter in particular, I noticed my journal, medical journal studying to be published often with patients writing about it.

Um, 'cause often it was clinicians [00:05:00] themselves, medical practitioners themselves, people in the frontline of caring for people with COVID who found themselves getting infected with COVID and then realizing they had long COVID. So, so, yes, I, I, I was interested in, in the condition from early on. Aaron Goodman: Most of the listeners are people who have MCS as well as researchers and clinicians, and, and I think, like me, they're going be very interested in learning more about the experiences of people with Long COVID.

[00:05:30] But I wanted to ask you, professor Lupton. Do you ever get requests from people who like me, you know, researchers or podcasters or students with other ill other contested illnesses who want to know more from you about long COVID, even though we're not talking necessarily about the same illness? Yes, I do.

[00:05:49] Deborah Lupton: And when I write about Long COVID, because again, going back to my background in health sociology, I'm very aware of the sort of. Power [00:06:00] dynamics around what we call in sociology, contested illnesses or illnesses that the medical profession doesn't take seriously. For example, a few decades ago when people were trying to get attention to RSI and a lot of, you know, again, it was a contested illness, so there's quite a few of them around. There have been quite a few of them around, and there's a history of the medical profession not taking those kinds of illnesses seriously because it's often very hard to find biomarkers for them.

And so it's often psychologized, it's all in your head. You just need to see a psychiatrist. I'm just being aware from my decades now of research into just health experiences. Including contested illnesses that, um, there's been. Been a long history of the, unfortunately, of the medical profession failing to give the kind of care and acknowledgement to people with those kinds of contested illnesses for a long, long time.

And [00:07:00] interestingly, uh, there's often a gender dimension too. So it's often. Women have often found themselves even more sort of discriminated against when they have these contested conditions, people of color too. So it's often the more marginalized you are, but the more underprivileged you are. People, people, low socioeconomic status, who don't have quite the sort of, um, articulateness or education to challenge the medical profession.

[00:07:31] Older people. If you're in one of those categories, you're even more likely to find yourself discriminated against if you have a, a contested illness. Before we dive into, um, the marginalization and the, the many ways people with lung health would experience marginalization, would you like to talk a little bit about, you know, briefly about what is Long COVID and how many people are impacted by it?[00:08:00] 

[00:08:01] How many people in the world have had COVID? How many people have had it more than once? We don't actually know for sure. We can assume though, that nearly everyone worldwide has had at least one, uh, infection of COVID, and many, many more people have had more than one. But these days, most countries don't encourage people to test when even they have, might have symptoms.

There's no longer statistics collected about how many infections there are. I mean, in my country there, there isn't any more. Even though we were really good at it in the first few years of the pandemic, asking people to test and asking them to report the test results. So we had a very good handle on it for a long time, but.

No longer, and I'm sure, and I've heard, I know that's the case in most, if not all countries now, so we can't put, actually put a number on it because the statistics these days about how many people, how many COVID infections they've been worldwide are very, very loose. [00:09:00] But we know it's millions around the world.

There's also not a lot of reliable information about long COVID because Long COVID getting back to this contested illnesses, it's contested diagnosis. There's a lot of debates still, again, in the medical profession, even about what to call it. Now Long COVID itself is a term that, that people who had continuing symptoms of COVID after the first acute infection, they gave that title, they said this, you know, this is what I've got.

It's long, long-term COVID. Long hauler COVID, Long COVID for short. It basically means. Symptoms after initial acute infection from COVID that persist. Again, definitions vary. Sometimes it's said to be one month after the acute infection or three months after the acute infection, but it's several months at least.

At least one month, if not [00:10:00] more, is the medical definition of Long COVID of continuing symptoms that can't otherwise be explained by any other. Reason other than the fact you've had a recent COVID infection. It's hard to estimates of how many people have long COVID vary wide widely actually. So again, we can't really put a number on it.

I mean, I've seen 5%, I've seen 10% of people I've seen. 25%. I've seen 30% in lots of different studies. So let's say it can be anything anywhere between say, 5% to 30% of people who've had one COVID infection. But of course, if you've had more than one COVID infection, which a lot of people have had, the risk is greater.

So it goes up the, the likelihood you'll have Long COVID goes up every time you're reinfected. In the medical literature, it is often called post-acute sequelae of COVID, which basically just means continuing symptom again in medical jargon, continuing symptoms after an, an acute affection of of COVID.

[00:10:59] But [00:11:00] I, but patients prefer the term Long COVID, which is a patient made term. 

Aaron Goodman: You write that many people with Long COVID have had to adapt to a new social reality marked by isolation, stigma, and strained, strained relationships. And this will sound very familiar to people with MCS. Would you like to talk a little bit about this?

[00:11:30] Deborah Lupton: Yes. Well, um, the more you read people's accounts of what it's like to live with Long COVID, the more depressing it is. And in my book, long COVID in Society, every chapter that's contributed to the book, apart from mine, actually I've, as far as I know, I've never had COVID and I. Therefore don't have Long COVID.

I consider myself an ally of people with Long COVID rather than having my own lived experience. I'm really vigilant about protecting [00:12:00] myself from COVID. I mask up everywhere I go for the N95 and, and yeah, so anyway, because I, because I do know what the awful impacts are. All the other chapters either authored by people who have lived experience or.

Co-authored with people who have lived experience. There's a chapter involving interviews with medical professions about how they, what they think about people with Long COVID or ME/CFS actually as well. I mean, the attitudes of health professionals who were interviewed for this study. You know, just appalling in terms of, again, not showing much care or acknowledgement of people with both contested conditions.

There's a chapter contributed by British sociologists who interviewed families with very young children, in some cases preschoolers right up to adolescents. Who [00:13:00] themselves, the children were living with Long COVID and just the terrible stories you hear of how even tiny children haven't been, haven't received the treatment and acknowledgement, they haven't received the care school children have had to take a lot of time off school. And they've found that, um, their schools haven't been understanding just the whole, I mean the whole spectrum from tiny children right up to older people, the stories that are told in the book by being shunned by family members who don't. Believe them, that they are seriously ill and disabled.

As I said, by schools, by employers, but particularly healthcare professionals. It's, you know, it's given that really it's the mandate of healthcare professionals to show [00:14:00] care to patients who come to them for healthcare. I guess I'm just. I mean, I'm not, okay. I shouldn't say I'm surprised because as a medical sociologist I know about the pipe power dynamics and you know, and I talk about this in my chapter in the book, you know, the medical profession likes, you know, it's a powerful profession.

Highly educated people, very high status profession. There's this term called medical dominance in health sociology that's used to, to refer to the power and authority of the medical profession. I mean, that's the reason we go and see doctors, right? Because we trust them to be authoritative. If we knew what the problem is, we wouldn't go and see a doctor so well.

[00:14:46] Aaron Goodman: I think part of what you write about is that we are increasingly educating ourselves and there's sort of a pushback against that from the medical profession.

Deborah Lupton: That's been going on for a long time. [00:15:00] I actually did research back in the nineties looking at how both doctors and patients think about this idea of being a health consumer.

In the 1970s, there was a big push for people to become more empowered and to sort of. Seek out more information about their bodies and their illnesses, and to not just accept that the doctor knows everything. Now, that's very well and good, but again, it really depends on your education level, your social class, your age, whether you actually [00:15:33] have the ability to feel empowered when you come up against a highly educated, you know, wealthy medical professional. It's very, very intimidating. When I interviewed Australians, in this case about of all ages, I often found that, for example, older people didn’t want to be consumerist.

They wanted to be able to trust their doctor. Yeah. You know, they were ill. Um, so I mean, the health [00:16:00] consumers movement is great for some people, and it was, has been really important for people with Long COVID. There are people who are writing about their own lived experience of Long COVID. With all that education and authority behind them, they're still struggling to be recognized and acknowledged by the clinicians that they see.

[00:16:23] Aaron Goodman: You write about epistemic injustice, and I'll just quote you: The struggles of people living with contested, chronic, rare, stigmatized, or invisible illnesses.” Could you please talk a little bit about what epistemic injustice looks like for folks with Long COVID? 

Deborah Lupton: Epistemic means knowledge. It relates to the, to knowledge, how much knowledge people have.[00:16:49] And so the term epistemic injustice relates to the, again, that disparity between how much knowledge people have, which relates to how much authority they [00:17:00] have when they. When there's a medical, what we call a medical encounter, right? A patient goes to a doctor and a doctor relates to the patient. What happens with Long COVID and with other contested conditions is that it gets back to what I've just been saying about a consumerist approach being a patient, consumer if you don't have the wherewithal to acquire that epistemic authority. Doctors, clinicians already have it from their training and from the medical authority that they have. Just by being a member of the medical pro profession and the status that they have, they have epistemic authority in terms of medical [00:17:45] issues topics. 

I certainly feel that authority and the imbalance in the medical encounter. And when we are talking about specialists too, as opposed to general practitioners, right. Specialists have had even more training, [00:18:00] very long training. I mean, I'm not saying they don't have training. They do have, you know, they absolutely do.

[00:18:05] They have to go through very long training to be a specialist or even to, you know. Yeah, complete a medical degree. But what that means is they are authorized by the state, by the university system that they've been through, by the specialist system that they've been through, you know, the hospitals they work for, and the associations that they're part of as part of the various specialists associations to have that epistemic authority.

So again, there's an imbalance already when someone who goes. To ask for help from a qualified physician. There's already an imbalance there, unless they themselves is a, are a qualified physician. And this is where it's interesting, where it's physicians themselves, or clinicians themselves, or medical researchers for that matter, with a medical degree who have Long COVID.

Because they both have the [00:19:00] epistemic authority from their medical training and expertise. And they have the lived epistemic authority from living with that particular condition. And for a long time in the medical literature, there's been some really interesting accounts even before COVID, you know, the, the doctor as patient and how it's uncomfortable often for doctors themselves to be in that situation. But also what they often find is they suddenly can see what the patient perspective is. Whereas before they couldn't really, you know? Yes. So it's a very interesting combined epistemological position where you have both the medical authority and the lived experience of that condition together.

[00:19:49] Aaron Goodman: I'm just thinking about what you've been sharing and it seems like a lot of the times the, the physician or the clinician has a different set of information than we have, [00:20:00] or they haven't been trained in the condition that we have, whether it's Long COVID or MCS, so there's a gap there. So I can imagine, and someone told me once, people don't get it until they get it.

[00:20:14] And I imagine it might be like that with the, the physician who happens to get long COVID, they don't get it till they get it. And then if they do, are they able to be more empathetic or supportive or helpful to people? 

Deborah Lupton: Yes. Mm-hmm. Yeah. The short answer is yes. Mm-hmm. Yes. That comes through loud and clear.

Clinicians who before COVID, you know, had cancer, for example, any other major illness. They, they just suddenly got it. What it was like to be a patient confronting such a serious illness mm-hmm. Or disease, often invisible condition when in maybe they have experienced gaslighting or, or dismissal.[00:21:00] 

Aaron Goodman: Do you want to talk a little bit about what gaslighting looks like for folks with, with Long COVID? What, what does that term, what does that term look like? 

Judith Lupton: Well, gaslighting, it's a, it's has been used a lot in relation to long COVID, and it's really interesting. It actually comes from a Hollywood movie, I think from the fifties, 1950s, um, which tells the story not of a person with a health condition, but a of a woman who's, and it's called gaslight.

And it actually relates to actual gaslights, which is how, um, homes used to be. Split right before electricity with gaslights, actual lights made with gas, with, you know, lit gas. In this movie, the character, the woman is, um, tripped into by her husband into thinking she's going mad. And part of what he does is he makes the gaslights sort of flicker.

And she asked him what's going on? And I [00:22:00] don't know, you're imagining it, right? That's where, where gaslight comes from, from an actual movie involving Gaslights. Um, but now it's used metaphorically, of course to talk about how uh, when people talk about feeling gaslit, it means, and it's usually used relation to the clinicians they're seeing, um, that those clinicians.

Again, psychologists, they literally have often said it's in your head. I mean, they literally have used those terms in relation to contested illnesses, including Long COVID. It's go away and do some stress relief, you know, heavy, deep breathing or some kind of, you know, stress, um, you know, healthy lifestyle exercise.

And that will mean that, um. You'll get better because I don't, you know, the doctor will say, I don't think it's actually a physical condition. I think it is something to [00:23:00] do with your psychology. So that is what gaslighting means. It means people are being told basically, well, not quite that they're mad, but a little bit of, you know, it's a, it's all in your, it's a psychological thing, and they're not being believed that they're actually having physical symptoms for physical reasons and.

Aaron Goodman: This is something that's happened a lot to folks with long COVID, I imagine. 

Deborah Lupton: Oh, yes, yes. They constantly talk about that as part of the social impacts of having Long COVID. And again, it's not just doctors, it's um, family members. Mm-Work colleagues.. And that can be really devastating. 

Aaron Goodman: Can that create multiple injuries? 

Deborah Lupton: Oh, totally. It's, it's extremely devastating and it makes people feel, well, hopeless. There's a, comes loud and clear through people's accounts of their experiences. They end up just feeling hopeless [00:24:00] about yes, getting any kind of help. 

Aaron Goodman: Building on what you've been sharing around the medical encounter, that this can be a form of, you “call multi-traumatic abandonment, entailing, bodily incapacitation, medical neglect, and psychological and social isolation, as well as political neglect”?

Deborah Lupton: Actually, you're quoting Vivian Batis Boone in that passage. Uh, but it's really devastating on a lot of levels. Yeah. So yeah, Vivian Batis Boone has a chapter in the book, and she's one of those academics I was referring to who herself lives with Long COVID, and she's actually a philosopher. So her, her chapter is a kind of auto ethnographic account, which basically means talking about her own experiences of Long COVID, but [00:25:00] she does so in quite a philosophical way. 

Because, you know, that's, that's what she, that's her academic background. If you read her chapter, it, it really does. Well, every, again, every chapter in the book just tells the most awful story about just how people are being, feel like they've just completely discarded by society.

Abandoned. Yeah. All that hopeless again. Yeah. Yes. And there are a lot of parallels for folks with MCS who feel abandoned by the healthcare system, by the political system, and by their families and friends, often their loved ones. Do you see this as a form of trauma? Oh, yes, definitely a form of trauma. When you are, when you are not believed, when you're suffering, and I think the term suffering is a very relevant term for people with these contested illnesses.

[00:25:55] Suffering both physically [00:26:00] with the devastating impacts of their condition. But they're suffering from the abandonment of by, you know, at the hands of others. You are right that there's sometimes violence that's inflicted on people with Long COVID by clinicians when it comes to situations, when they're encouraged to en engage in therapy, that that may not be appropriate and could even be harmful for them. Something that has happened. 

Aaron Goodman: I know for a lot of people with MCS we're often told to take prescription medication that can add to the bodily burden of chemicals and create even further illness. Um, and it's just really inappropriate 'cause it doesn't address the problem. [00:26:45] Is this something that folks with long COVID deal with? 

Deborah Lupton: Yes, definitely. People with other contested illnesses, um, such as MCS, but also ME/CFS — Chronic Fatigue Syndrome. [00:27:00] There's a lot of parallels with people who have Long COVID because fatigue is a major symptom from a lot of people with Long COVID, just this overwhelming fatigue that is not actually improved by rest.

Unfortunately, both people with ME/CFS and people with Long COVID have often been so-called treated by healthcare professionals by saying, okay, let's do this, um, exercise program and build up your, I guess, your strength and your capacity to. Move, you know, to not have to lie around in bed all day, which is basically all they feel up to.

But unfortunately there is already a lot of research from, from people with Ms. CCF s, let alone more recently, with wrong people, with wrong COVID, that that kind of therapy is totally counterproductive and it can actually lead to people having crashes and, you know, further exacerbation of their symptoms.

But it seems to be one of the [00:28:00] most commonly used therapies. For people with long COVID, even though people with ME/CFS have been saying for many years now that it's counterproductive. And yes, I, you can use the term violence when those kinds of inappropriate therapies, whether they be medications or physical therapies, people are encouraged to do them.

Because they, they do end up just having a negative impact on people rather than helping them in any way. It's the adverse of help, it's the reverse of help because, uh, help, because it does end up often making their symptoms worse. S Yes, that again, you know, this seems to be quite a lot of, um, medical ignorance.

Going on here in terms of clinicians often seem to have no other options to offer people. Beccause there still isn't an effective treatment for Long COVID.  [00:29:00] So clinicians have just seemed to be casting around for what they already kind of have used for ME/CFS. It's just the more that people talk about their experiences with medical professionals.

Every study you read, just again and again, the ignorance. The ignorance and the lack of wanting to learn more about. And to actually listen to people with long COVID properly and actually hear what they have to say, just, it just comes through again and again and again. That really resonates.

[00:29:36] Aaron Goodman: It seems shocking that clinicians, even when they're faced or met with so many people, so many patients with an illness like MCS or Long COVID choose to remain ignorant.

[00:29:54] Deborah Lupton: Look, I think there's, again, I'm being super hard, on medical professionals, but [00:30:00] there is an arrogance that gets back to medical dominance, medical authority, epistemic justice, injustice, epistemic authority. And when you think about it to be a medical practitioner. You kind of have to present yourself as authoritative because again, this notion of trust, if you patients need in the first instance to trust your authority, again, that is why they're there.

They're seeking help for someone. They would like to trust to have that authority, whether it's for a diagnosis, whether it's for, you know, continuing prescription of medications that someone needs, whether it's a referral to a specialist, that is the point at which the, you know, they're there for a reason.

They're there for help. Patients are there for help. [00:31:00] If they could get that kind of help from, you know, online patient communities, then they wouldn't be there seeking it from a doctor. But doctors are the gateways to a lot of this. They're gateways to prescriptions. They're a gateway. They're a gateway to referrals, to specialists.

They're a gateway referrals. For pathology testing, there's no other way to get that kind of treatment or diagnosis than from a qualified medical practitioner. And, and so people are forced to go if they, if they want or need those things. They, they are forced to go and see a medical practitioner and it's all they will to say, well, patients can go on and do their own research, but there are certain things that patients.

[00:31:45] They still need to go and see a medical practitioner for, and then even something like getting a, you know, a doctor's certificate if you need to take time off work.

Aaron Goodman: Do doctors diagnose people with Long COVID or is it similar to [00:32:00] MCS where there actually isn't a diagnostic code and many just don't or can't?

[00:32:08] Deborah Lupton: Look, I think it depends on what jurisdiction you're in, what country you're in, whether there is an actual code, because it all wraps in with how people are funded as well, doesn't it, in terms of diagnostic categories. How the healthcare care system is funded, how health insurance might pay, or universal insurance might pay.

I do know from reading people's accounts of their experiences that yes. It is possible to be diagnosed with long COVID or, or whether it's called that, or post-acute sequelae of COVID, you know, the medical term. It is possible to receive that diagnosis. It is possible for a clinician to say to a patient, I think you have Long COVID, or I think you have post-acute sequelae of COVID.

People [00:33:00] People do get diagnosed, but. And for many people a diagnosis, and again, this relates to other chronic conditions or contested conditions. For many people, getting a diagnosis, getting a label is important. Just having that label, having that diagnosis, knowing what the heck is going on with your body and your health is, can be incredibly psychologically validating for people in the first instance.

But there is no, as I mentioned earlier, there is no actual, well, if there's damaging therapy that damages people, yes. That a doctor might then go on prescribe. But there's actually, once you've got the diagnosis, there is no actual, yeah. As yet effective treatment or therapy. So it's great to have the diagnosis and maybe you can use that diagnosis to get accommodations from work or at school.

So that's valuable. Or to get [00:34:00] time off. Yes. Medical time off. Yes. And maybe you can get some referrals to some specialists. You know, there's people with long COVID who have seen umpteen specialists, lots of different kinds of specialists. But again, those specialists have not offered, have nothing to offer them as yet in terms of any kind of treatment or therapy, sadly.

[00:34:25 So the diagnosis gets you only to a certain point. Which can be validating, but then after that point, there actually isn't anything that it offers you. 

Aaron Goodman: I think the accommodation piece that we rely on to, to get that diagnosis is very critical in in many, in many, for many people. You write about the biographical disruptions.

Deborah Lupton: I don't have Long COVID, but I imagine it’s like MCS in a lot of ways, it just changes the way one fundamentally [00:35:00] has to live, and it can often make us feel very apart from the. The dominant society. So how does long COVID change people's way of living? Well, for those who have, who have severely affected, I mean, it varies.

[00:35:17] Obviously, you know, there's a big spectrum of, of how badly affected people are by the symptoms. And some people they fluctuate as well, bearing in mind. Okay, so some, some days can be better than others. But for those who are really suffering from the worst impacts of Long COVID, it can mean being bed bound, like totally bed bound and just not having the energy to get outta bed and do anything.

For some people that can go on for weeks or months or maybe even years. For others, they might have days like that, but then some other days feel a bit better and they don't really know why. 'cause [00:36:00] again, we still don't really know what's going on with, with these symptoms. So, but, but yeah, the most extreme people can be bedbound for months.

Aaron Goodman: You characterize this as a slow death? 

Deborah Lupton: Yes. I used the term at the very end and the conclusion of my introduction chapter. Because, and it gets back to the fact that it's a chronic, Long COVID is a chronic condition. There is no treatment or cure for it, so people have died of it. Sadly, some people have died by their own hand because they feel so hopeless, but people have also died just because their illness just has overwhelmed them.

Their body systems have failed them. I mean, it is fairly rare, but it has happened. For other people, it does just feel like a slow death because they can't see a light [00:37:00] at the end of the tunnel, and it's slow because it's just gone on for years. For a lot of people. Now, since 2020, the first long haulers or the first people with long COVID, early 20, 26 years now, some people have had it.

[00:37:16] With again, no parent improvement. So that's what I mean by slow death. But I guess you could also, in social terms, it's a social death because they are still, they have to continue to be excluded from the usual social kind of parts of life. 

Aaron Goodman: I wonder people with long COVID are many finding friendships, solidarity support online with other folks.

[00:37:48] Deborah Lupton: Yes. And, and from the, from the start, that has been, as I mentioned earlier, particularly beginning on Twitter of all places, but also Facebook actually. So very early on, [00:38:00] um, Facebook groups, special groups, people with long COVID were established in early 2020. And I, I do know that they are still going on Facebook groups, support groups.

In fact, Facebook actually, has been, I've written about this before, actually, Facebook groups. So special groups, you know, often they can be private groups or by men, you know, by invitation only, and we have to apply. So they're not, you see always public groups, but there are a lot of them around for, for all sorts of illnesses.

Rare illnesses. Um, for people with children with rare ill or serious illnesses, or for people who have them themselves, it well before COVID. And so for COVID as well and for Long COVID, there's being a lot of Facebook groups folks with MCS, we often find the same kind of support. 

Aaron Goodman: There are many Facebook groups for people with MCS and in other online spaces, and they're very valuable.

But what is the real benefit of these? Is it also a form of agency, or [00:39:00] collective agency as you see it? 

Deborah Lupton: Yes. Yes, definitely. And we saw that with. With the beginning of discussions of Long COVID on Twitter and on Facebook where there was just a lot of, well, on Twitter in particular, it was public of public discussions because Facebook, as I've mentioned, can be.

Private groups and often they are from people with Long COVID. They often are a private group. But on Twitter, it was a very public discussion in the first year or two of the pandemic of people just drawing attention to Long COVID and you know, talking about their own experiences very publicly. And I think in that way, the public aspect of Twitter actually super important for people because they could easily go on and look at them.

Hashtags, Long COVID. There was a French one, you know, various languages too. So yeah, social media actually was, [00:40:00] was and continues to be. Really important way of getting the message out, getting public awareness happening, and also drawing attention of health organizations and clinicians.And you know, they started forming groups with clinicians and writing [00:40:17] journal articles about Long COVID for, um, prestigious medical journals like the British Medical Journal as well. So they actually managed to have a huge impact and it all began on Twitter and Facebook. 

Aaron Goodman: Very interesting. You know, as we perhaps, um, wrap up, do you see any hope that research or public awareness could change the situation?

[00:40:45] Deborah Lupton: So there is no longer as much or there's no more skepticism or medical denialism and dismissal. I do see hope and one reason for that is just the sheer [00:41:00] numbers, given that COVID. As we were talking about earlier is such a prevalent, well, you know, nearly everyone has had COVID, so that means nearly everyone is at risk of long COVID, particularly if they keep getting COVID.

And governments around the world aren't really doing anything to stop people getting COVID again and again and again. Obviously Long COVID isn't going to go away anytime soon. In fact, more and more people and are be going, are gonna be getting it, given that more and more people are continuing to get COVID in infections and are at risk of Long COVID.

So I do think that just the sheer numbers are going to just, you know, have impacts on society, on the economy, and there's researchers out there doing research on the epidemiology of it. So I do think there is hope. Yes, just the sheer numbers, just the sheer numbers of people with Long COVID will just mean that can't be ignored for too much longer.

[00:41:58] Aaron Goodman: You've been listening to The [00:42:00] 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 Brachman Hoffman Foundation and listeners like you. If you wish to support the podcast, please visit listen.chemical sensitivitypodcast.org. Your support will help us continue making the podcast available and creating greater awareness by MCS. To learn more about the Chemical Sensitivity Podcast, follow the podcast on YouTube, Facebook, Instagram, and Blue Sky. 

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The Chemical Sensitivity Podcast and its associated website are the work of Aaron Goodman [00:43:00] made possible with funds from the Marilyn Brachman Hoffman Foundation, supporting efforts to educate and inform physicians, scientists, and the public.The content opinions, finding statements and recommendations expressed in this chemical sensitivity podcast, an associated website, do not necessarily reflect the views and opinions of its sponsors.