The Chemical Sensitivity Podcast

Episode 33: Conversations with Doctors. A Discussion with Suvi Kaikkonen.

October 05, 2023 The Chemical Sensitivity Podcast Episode 33
The Chemical Sensitivity Podcast
Episode 33: Conversations with Doctors. A Discussion with Suvi Kaikkonen.
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Show Notes Transcript

Episode 33 of The Chemical Sensitivity Podcast is available now!
 
It’s called “Conversations with Doctors.”
 
Subscribe where you get your podcasts.
https://www.chemicalsensitivitypodcast.org/
 
This episode features a conversation with Suvi Kaikkonen.
 
Suvi is a linguist in Finland. She specializes in how people who are impacted by poor air quality in their homes and get ill are often dismissed by doctors.
 
It’s something a lot of listeners with MCS will relate to. 
 
Thank you for listening!
Please share your feedback with us. We love hearing from you.


Read a paper by Suvi Kaikkonen and colleagues:
Making sense of the deligitimation experiences of people suffering from indoor air problems

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Aaron Goodman  00:11 

Welcome to the Chemical Sensitivity Podcast. I am Aaron Goodman, host and founder of the podcast. I am a journalist, documentary maker, University instructor, and Communications Studies researcher. I have lived with multiple chemical sensitivity or MCS for years. MCS affects millions around the world and is also known as environmental illness, chemical intolerance and toxic, and induced loss of tolerance or tilt. As you know, many people with the condition are dismissed by health care workers, employers, friends, even family. Countless people with MCS struggle to find healthy housing and get accommodation at work and school, and we suffer in all kinds of ways. 

The purpose of the Chemical Sensitivity Podcast is to help raise awareness about MCS and what it's like for people who live with it. We feature interviews with many MCS sufferers as well as some of the top researchers and experts in the world, and we're just getting started. 

I am grateful to listeners who support the podcast. If you would like to make a monthly contribution or a one-time donation, please find links on the website, chemical sensitivity podcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. This podcast belongs to the community and the purpose is to advocate for us all. Your help really means a lot, thank you.

 This is episode 33. It's called Conversations with Doctors. We're speaking with Suvi Kaikkonen. Suvi is a linguist who lives in Helsinki, Finland. She specializes in interactions that people with so called contested illnesses, including MCS have with health care workers. Suvi’s, doctoral research explores how people who are impacted by poor air quality in their homes are often dismissed and delegitimized by doctors. It's something that I know a lot of listeners and folks with MCS are familiar with. 

In our conversation, you will hear Suvi explore how many doctors are not adequately informed about what she calls indoor air sufferers. Many of them develop symptoms that people with MCS experience frequently. She talks about how many doctor’s attitudes are influenced by other financial interests, which impact the doctor-patient relationship, and why doctors often do not take women's health issues seriously. I hope you enjoy the conversation and find it a benefit. 

On The Chemical Sensitivity Podcast, we release new episodes twice a month, please subscribe on where you get your podcasts, comment about what you hear in the episode, and share with others. Find us on social media, just search for the chemical sensitivity podcast, podcasting, MCS. If there's someone you'd like to hear an interview on the podcast or a topic you'd like us to explore, just let us know. Send an email to info@chemicalsensitivitypodcast.org and thanks for listening. 

 

Aaron Goodman  4:35

Suvi thank you so much for taking the time to join me today and on the podcast. I've been looking forward to this and I think people are going to be really interested in learning more about your research so thank you.

 

Suvi Kaikkonen  04:41

I am very pleased to be here. Thanks, Aaron, for inviting me.

 

Aaron Goodman  04:46

Absolutely. Would you like to say a little bit more about yourself and, you know, listeners across the world?  Finland is a relatively small country in terms of population, people might not be familiar with Finland, so would you like to share a little about who you are, where you are, etc? 

 

Suvi Kaikkonen  05:10

Absolutely. Yes. So I have a background as a social worker, I have been working more than 10 years with young people aside from psychosocial support of young people in trouble. And this is like in like originally where I come from, and then when it came to a time to think something else, I chose the Russian language. So my linguistic background is actually in the Russian language. So,I have studied the Russian language and as my minor Finnish language and this is what brings me to today, basically. So I'm a social worker and linguist. And at the moment I work at Helsinki University, which is the biggest university located in the capital of Helsinki, I'm finalizing my PhD, my doctoral dissertation there and working on some other research in Finland. Yes, Finland. It absolutely is a little country, even though I heard someone saying that it is like the most US country you can find in the world. I've never been in US so I can't tell. But I've been in Canada. So something familiar. Yes.

 

Aaron Goodman  06:35

Yeah. Fascinating. 

 

Suvi Kaikkonen  06:39

And a population of 6 million people. So few. We are very few. We're in Northern Europe, between Russia and Sweden. And we have a long history with which both of them? And I would say that Finland is a very typical, like Nordic democracy or Western democracy. Yeah, and what else? Our population is, of course, in towns and cities, it's concentrated in cities and the countryside is, it's more or less struggling.

 

Aaron Goodman  07:20

 Right? Most younger people moving to the cities. Yes, exactly. Yeah. And I think the context is, is helpful because you know, your research, a large part of your of your research focuses on indoor air problems, and sick building syndrome. So Suvi, could you talk to us a little bit about how you understand indoor air problems and sick building syndrome? And then yes, there's something about Finland, like, these are problems everywhere. But is there something about the climate in Finland, or the way buildings are built? And I don't mean to put many questions at you at once, but what kind of buildings are we talking about?

 

Suvi Kaikkonen  08:07

I guess we're talking of many kinds of buildings. And it is of course, a good question why indoor air problems are so prevalent in Finland, but indoor air problems, so, we talk about problems that contaminants that emanate that are emitted into the indoor air they are they can be because of molds, because of chemicals, because of moist, and those kinds of problems. And they, of course, are not absent in other countries, but according to statistics, European statistics, it seems that even though our buildings are in the best condition in one way, we have complaints of indoor air quality are very prevalent. And that is, of course, an interesting question that what is what is going on here and there are different explanations for that, including that there's something in how we're built. And of course, there's certainly something in our climate we have winters that used to be cold and summers that used to be not hot but warm. So, four seasons basically as it like in Canada, I would say pretty much. And now the climate is of course changing it's getting more humid, which doesn't quite help. 

And actually, now we are talking that we should adjust our ways of constructing buildings in order to meet the right like how to make it moist proof in the air, which is more humid and more vulnerable to damage. But yes, some people I've heard, and this is only speculations, I've heard that there might be something in the ways in comparison to Sweden. For example, I've got to understand that indoor problems are prevalent in Sweden, but not to the extent that we have. And we certainly have a similar climate. So can they be some therapy, something that we do differently when we build houses. And they are, of course, the houses from certain decades that are most vulnerable to these problems, they might be only 3050 years old. And we demolish them, many of the buildings have to be demolished. And of course, it's a waste of money and resources that you only build houses that lasts for, say, 30 years. But then there is this other theory, or it's not really a theory, but the kind of speculations that what if indoor air like the idea that I have symptoms, and there has to be an explanation.  

So I heard my neighbor saying that it could be caused by the air in the building. So what if mine are too? And of course, there are millions of reasons why someone can have say, Flora, kind of symptoms, general symptoms. So there's this kind of social contamination theory, so to speak, also that if it's the problem it is very diffused, and it kind of attracts people to think in those terms.

 

Aaron Goodman  11:43

Right, right. So there's more information about this problem. And so going back to the root of the problem could be construction, chemicals that are kind of leaching out from the materials within those buildings. If I get it, if I understand correctly,

 

Suvi Kaikkonen  11:59

Yeah, that's kind of a viable option.

 

Aaron Goodman  12:02

Right. And so a lot of people in Finland are developing illness, you know, that you refer to as a sick build, and others also call refer to as sick building syndrome. And how does this manifest? You talked about in your research about mold, refugees, you know, people listening this podcast, many will be interested in the impacts of mold. People with Multiple Chemical Sensitivity, environmental illness, those are some of the issues you're looking at to in your research?

 

Suvi Kaikkonen  12:38

Yeah. Yeah. manifests in a sense like, how your symptoms or lives of.

 

Aaron Goodman  12:45

Yes, in terms of the impacts of inhabiting, working, living going to school? What's happening to people?

 

Suvi Kaikkonen 12:55

Yes. Most of the people are suffering from quite mild symptoms, I would say. And there are similar to any environmental condition, I would say like general symptoms, lung problems, stomach problems, neurological issues, and so on. And most of them in surveys, it seems that most of the problems are fleeting, and are quite mild. But then we have a group of people, there's mold refugees, or that kind of people who get really seriously affected and then it seems to be rather a nightmarish situation for the for the people. So at the worst case, it seems to mean that all the pillars like the basic pillars of your life collapse at the same time, or at least get cracks. So if you can't, if you're if your work able, if you if you have capacity to work, but not like being at your workplace. 

Of course, after COVID pandemic, we don't see it as a big problem. So you could be at home and work from there. But years before this, it was it. It was a big problem for people. How do they do they work remotely? And of course, the problem is very prevalent in among people who, who live in public organizations, like nurses and teachers and the ones that get exposed to our municipal buildings so to speak. So they don't even have the possibility to work remote. Yeah, and then financial problems if you cannot work, so you very quickly end up not on the street because in Finland, people usually don't end up to the street but If someone dies, so indoor air sufferers have had a risk, because they are not entitled to the social security allowances in the system because this because the condition is contested, it's not fully recognized. It is partly recognized that pulmonary problems and those things they are, there is a strong evidence showing that there is an association between the moles and lung problems. But other like not all people have lung problems that would entitle them to get the allowances if they are sick. So they might end up being sick for a long time even incapable of working. Yet being an non entitled to support by the society. And that's a huge problem that we are struggling with. So what do you do then, like, you end up with cilium solutions like they, they diagnose you with depression. And both participants, both doctrine and patient know that this person is not depressed. But it's better than nothing. But it must be humiliating to be.

 

Aaron Goodman  16:20

I want to ask you more about your research, because it's really fascinating, you know, how you and your research, analyze the conversations, that people with sick building syndrome, and that includes people with Multiple Chemical Sensitivity when they go right when they go to doctors, those conversations, how they're de legitimized and dismissed? Before I ask you that Suvi, what led you to embark on this research in the first place? You mentioned? Previously, you had a friend or you have a friend who suffered from it? Yes.

 

Suvi Kaikkonen 16:59

So yes, I would say that I have both personal and scientific interests in this. One of my, my childhood friends got it really badly. And she used to be from this mold refugee and so her situation was very desperate. And like living by her sight, years after year, seeing her struggling and, listening, to how she described the difficulty in receiving help, when the help was like, most needed. So it really not only touched me, but I thought that something must be done to this thing. Yeah. And then at the same time, we had huge public debates in Finland about the problem. So it is a hot debate. It's heatedly debated in Finnish society that what's going on? What's wrong with these people is and all theories are there in the field, and what should we do? And I was thinking that, at least we should do something. And maybe these two things led me to this.

 

Aaron Goodman  18:18

Right, and, you know, heard you say that it remains contested. You know, it sounds like in Finland, very much the same, like, basically everywhere, as far as I understand that physicians don't have the training, or if a patient or if someone arrives in a doctor's office with multiple symptoms, then they're trained to just, you know, treat it as a psychological disorder. And they're really treating the symptoms. Right, you know, so it could be a neurological thing, but Well, that doesn't mean it's a neurological condition. It means that's the symptom of, you know, something much deeper. So what I'm trying to say is, it sounds like your friend was, didn't get the care that they needed. And also, I imagine that there are a lot of people who are chiming in who are ill-informed and looking at, you know, people who are developing sick building syndrome and not understanding and probably coming up with all kinds of explanations that don't really make any sense and are probably really offensive.

 

Suvi Kaikkonen 19:32

Yeah, people have really different experiences going to the doctor and seeking for help for some people, because doctors are different because it this is how the how the partly contested nature of indoor air illness manifests, that when you go to the doctor's office, you wouldn't exactly know what is their stance because there is no or at least at the time, when I collected the data for my studies, there wasn't any very much established way of dealing with these problems. So you could actually meet the doctor who did everything for you, and we're ready to believe whatever you told them. Or you might meet someone who was like, huh, maybe psychological. Of course, they wouldn't say it that strangely, but the IDM. So, it's, and this already is stressing for, for someone, because if you go, say you have an ear infection, you would never have to fear when you're going to the doctor that what will they say to you, they will just establish the condition and treat it already that you wouldn't know how you are encountered is stressful for anyone.

 

Aaron Goodman  20:50

 can't speak for everyone. But for me personally, it's how much do I say about it? Am I in a safe space? Will I be gaslit? Will I be dismissed or treated poorly or misdiagnosed? So your research really focuses on these conversations that people with sick building syndrome have with physicians? And you know, I've read some of your research and you're finding right that a lot of doctors are in fact D legitimizing dismissing. What did the there's a range of responses that you were mentioning? But what are you seeing in these discussions?

 

Suvi Kaikkonen 21:41

Hmm. Actually I couldn't say that. Many doctors are delegitimizing because it kind of, but the one that you read is focusing on those events, when a doctor's like arrives at suggesting some other reason for them. For the patient. It might not be that prevalent that it seemed, of course in that data set. But what was your question?

 

Aaron Goodman  22:13

Yeah. So when people with sick building syndrome in Finland, yes, go to the doctor. They're met by a range of responses, you know, some doctors validate, some don't. What are your findings showing? What is the kind of the range of experiences that patient with doctors?

 

Suvi Kaikkonen 22:36

Yeah, and yes, I've done two kinds of studies on the subject. I've been investigating the, like the lived experience of these people, and then the interactional process. And the interactional process is the one where you actually don't ask anyone anything, but you just look what really happens there. So they're nicely combined. But when we come to these experiences, so of course, we've had certain angles, when our research questions have formed what we get to know. But yes, one of the one of the studies on lived experience was about these delegitimization. experiences. 

And, and the patient or the sufferers, they seem to put forth for awhile, three kinds of kinds of causes or rationales why they have been delegitimized, and why was this what you are and already said that doctors are aren't knowledgeable. So, and that was, that was interpretation by the patients, that they thought that you cannot blame someone who, who wouldn't, would simply doesn't know. And usually, they thought that the doctors didn't know but also that this apply to their beloved ones to that if there because we all know that if you're suffering from contested in this, it might lead to trouble in your personal relationship as well because it kind of requires quite a lot from your beloved once and is and this is the case, especially with indoor suffers because you might be you might keep moving from apartment to apartment in the search of a place where you can where you are well, so will your family follow? And that puts quite much pressure on your beloved ones. So that was the one like someone not being knowledgeable, 

But then there, there seems to be another interpretation of why someone has been delegitimized. And that was like, low, low moral related that, that the respondents of the study, they thought that. And this is no news like this is very trivial in a sense that you must know all this, like you must have thought all these interpretations that some people seem to interpret that there, there are interests, that all authorities have their own interest. And if you think that we have buildings that are hugely expensive that like that, when it comes to, if I will say that this is true, so, I have to do something about it, this building has to be renovated, at the worst case, it has to be demolished, and it's expensive, something new kids have to go to school, so, I will have to build a new school. 

 

So will I actually admit that there is a problem here. So, that describes how the sufferers explained that money and morals and that things are involved. And the third explanation which they, which they attributed to the two other people, delegitimize legitimizing them was this society level, like, in discrimination. And in different levels. For example, women thought that women are not as listened in the society, society as men are. And, of course, it seems to be true that the black, the societal position in which women and men are is different, or the economical situation like your class, if you're, if you come from hiker classes. So, you might be your words might have bigger influence, than, than if you're in low economic situation. And many of the suffers, if they weren't at the beginning, they end up if the if the situation gets bad. So that kind of explanations, and I thought that they are very, like, they made sense to me and to other authors of the paper. I certainly wasn't the only only author in this paper will have to say,

 

Aaron Goodman  27:32

Yes, yes. And I'll share a link to your paper. Thank you, who authored in the show notes? Do you want to read it, it's really fascinating. So I think people listening will get a lot of this, you know, it, you know, you're referring to Finland, but these are quite universal themes, you know, being delegitimize by not everyone, but common to be told we have psychological disorder. You know, treating the symptoms rather than the root causes. 

 

Suvi Kaikkonen 28:06

Well, that's what the doctors are trained to do they deal with symptoms. So it's the more I've investigated this, the more sympathetic I am also for the doctors. They are not in the easy position in the doctor's office, we think that they have power, and they are gatekeepers. And that's, of course, true in a sense, but they are also human beings, they have limited skills, and limited resources in time and in timewise, and otherwise, so and limited. You were saying? Yeah, limited knowledge. Yes. You know, so some of them are more willing to admit it than others.

 

Aaron Goodman  28:46

Yeah. And it's much easier to say, you know, to give a test for, you know, a neurological problem than, you know, looking deeper and saying, Well, what is the root cause of this is this, you know, as a result of a chemical reaction or reaction to a chemical, synthetic chemical, or to mold? You know, because, you know, that's a much deeper exploration that, yes, know how to do.

 

29:11

Yes. And then we come to the question that how deep in causes, does medicine as science core, go? For example, if we think of DRA do you call it DRA? Do the kids have diarrhea? Yes. If you have that condition. So it can be caused because you drank impure, impure water, that's kind of the very proximate cause. But then, why did you drink that water? Was it just an accident or are you living in a wall area where no water supplies where there are no water that is clean? So that is the root cause of your condition. So the question is also that how long in the chain of courses kind of medicine go? And? Yeah. And what is comfortable for doctors in that very moment when you step in their office.

 

Aaron Goodman  30:13

Yeah. And I'm like a layperson in this area. Right. My knowledge is limited. There are different Yeah, because your link you're bringing, you're looking through a linguist lens of linguist, and I really want to talk to you more about that. But there are different kinds of medicine. Right? There's functional medicine, which I, as I understand it goes deeper. And, you know, there's, I've understood that too, yes. Which is sort of any new mentioned this, the pressures that doctors are under, you know, the most how, maybe not a lot of time to spend with each person who walks into their office. So they are under pressure, as well, as you know, and I think that's, that's fair to say, but because this is a podcast that's mostly listened to by people with multiple chemical sensitivities. That's really where my sympathy lies, I'll just show my car, bear my heart right away, you know, you know, what are the impacts on people, you know, through these conversations that you've analyzed between people with MCS and doctors when they are dismissed? What are the impacts of that kind of interaction?

 

Suvi Kaikkonen 31:30

I haven't exactly investigated the long-term impacts of delegitimizing my session experiences. But my understanding is, and this is very like every day, in everyday terms, understanding that it is, it might be devastating for someone's self-esteem. For your like, and it kind of spreads its influences to all in case of indoor air problems, it spreads its influences to different areas of life. So if you cannot get the diagnosis that would legitimize your condition as related to buildings, as cost, for example, your workplace. So you're in front of a choice, whether you will, will you resign, that's not a good option, because then you will be unemployed. And you will have to think of the next workplace, whether it's whether the air is such there that you can actually work, or you will have to resign again, and again and again. And the same with living, I have heard that people kind of move from apartment to apartment, and they always struggle with the same symptoms or different ones in each of those apartments. And it's psychologically very burdensome to kind of realize that, okay, this is not okay, either.

So shall I just get her my belongings, maybe destroy them, because they're, some people think that they have to be destroyed because they're contaminated if you're extremely sensitive, but the more the one, I've listened to these stories, and of course, I have to remind that not all everyone goes to this end. But when you listen to these stories, I kind of think that these people are living in a nightmare. It's kind of it, it has a very that kind of nightmarish atmosphere in those stories like, and there, there are studies that indoor air suffers, they often feel that they're hopeless, that they kind of don't have hope. They don't have resources, they are deprived of possibilities to influence their situation, that that kind of experience of powerlessness. And you can only imagine what it means in life. Like if you feel powerlessness, power, powerless.

 

Aaron Goodman  34:07

Yeah, that's right. And I think a lot of people listening will really relate to what you're sharing. And, you know, what's really interesting for me listening is that you clearly bring the empathy you know, from the social working side into more like scientific, linguistic research, which is really nice.

 

Suvi Kaikkonen 34:29

I never thought about that, but what Well, now that you say it, it might be that I actually it kind of what pushed me into this subject, which is societal, because as a linguist, I could have, I could have investigated the response particle, say I fit in and finish has that kind of response particle and my supervisor has, has done her Ph.D. in response particles your knee, they're like this very similar risk. one's particles that still have their own areas of, of like a function. So I could have chosen something like that. And in my master's thesis, I actually looked at imperative forms, even though they were in in conversations, but yet, you might be right that I have this kind of social worker lens. Still, it doesn't you don't get rid of that. 

And that's, that's very good that way. Yeah, not, not all who suffer from the symptoms. They don't get that ill, for example, many kids, because we have many schools that have indoor problems. So kids have, say, a headache at school, and they never have it at home. So it's, it might not become a huge problem. But then they say that it's fleeting, and it's it's mild and headaches. You might Yeah, it's fleeting if it goes away when you go away. It's mild, if it doesn't, if it doesn't harm you, seriously. But yet, if if it happens for nine years, every day, so how fleeting that actually is. Yeah, if you're going to the same school or your school path.

 

Aaron Goodman  36:13

Oh, yeah, that's pretty. That's a lot. Yeah, yeah, absolutely. I want to turn back to, you know, you talked about the sense of powerlessness, that a lot of people are some people who, you know, in going into the engagement with the physician, you know, they rely on the doctor to sign the form to provide, you know, that will lead to accommodations and housing or, you know, unemployment insurance, potentially and accommodations, a lot of, you know, provisions depend on that engagement on the diet with the doctor, right. And that's something that, yes, right, that's something that a lot of us experience and I go through, and I have to go through it every year, and it's very anxiety-inducing. So the doctor has a lot of power. 

And they don't have a lot of training in this area. And as you know, just to recap, they're under a lot of pressure from I'm, you know, just to build on this a little bit more from maybe policymakers from government, maybe from industry, from building industry, maybe chemical industry, you know, that don't want the public to know that these products may cause harm. But we want the doctors to be able to stand their own ground, don't we to be autonomous? So it's a little bit chilling to hear that we will these are patients' perceptions, right? They are that the doctors face pressures, right? But we try and figure out, right, why is it they can't just acknowledge this illness, which may be contested, but there is scientific literature that shows that it is a biological illness? Right?

 

Suvi Kaikkonen 38:11

Yeah. In my like, very, like, everyday experience in the sense that I've been talking to these doctors a lot. It, it, it seems to me that it's, it's often kind of a choice, kind of that kind of principal choice that it might not be so much what the patient tells in the office, but what the doctor like, believes before, like, in general about these kinds of problems, and what where do their emphasis lie? So that's kind of my unofficial explanation for why they just can't acknowledge the day, it seems to me that there are policies in different clinics that here this is how we go about these problems. And doctors and cities might have their policies, but that's kind of very just my unofficial kind of impression. 

But then, like a medical reason why they just can't say that this is all indoor problems is that this is genuinely a tricky, very tricky, like, illness. To, diagnose, that we have, we do have evidence that it's biological there are biological causes, in terms of molds and when it comes to every irritation kind of symptom, lung irritation, mucous membrane irritation, also volatile, this block of volatile organic compounds is associated with the symptoms, but then we do have evidence that that also personal per individual factors and psychology, psychological and psychosocial factors are related. They are all they are related at the associative level, which means that the study is quite convincingly shows that, for example, when there is when low when there is low support from the employer. So, people are at risk a bigger risk of reporting endo as symptoms, but we don't know which is the cause and which is the result. 

So, there are like associations that the studies thus far, so, so it might be either way, and this kind of knowing that there are these associations at the individual level, at a psychosocial level at psychological level and at a biological level, so, it kind of makes it so how would you decide with someone, and now, actually finished policies how to go about these problems is more going towards, we have to deal with the problem, we have to deal with the patient's problem there and then that we wouldn't know that it might be fruitless to, to go endless debate of what causes this, that we have to think how the patient has, how they can continue their lives, how they can continue at their work, because that's the most important, like, how to fix the ones life without knowing everything about the causes, because we have to admit that we wouldn't be able to do that.

 

Aaron Goodman  41:36

But we know mold is a problem. 

 

Suvi Kaikkonen 41:38

Yeah. Yes. Right. Yes. And yes, there are. There are many buildings in Finland that have had to be demolished because of the mold problems, especially schools. Even hospitals have been like huge hospitals have been shut down. Yeah.

 

Aaron Goodman  42:04

That's good, in a sense. But yes, your research I think you write about and correct me if I'm wrong, doctors or doctors, labeling people with sick building syndrome as good citizens versus bad citizens?

 

Suvi Kaikkonen 42:21

That's no, that that's my supervisors’ study. I haven't been very much involved in that. But yeah, what you refer to is my supervisor, Eric Afina study where he kind of looked at, at rhetorical strategies by which the sufferers themselves kind of manage their one rebel identities, because you know, when you when you are in vulnerable situation, when you are at risk of being delegitimized, at risk of being somehow rejected with your interpretations. So, you have to, like socialize, you have to come up with, how do you go about it? How can you sustain a self-esteem of a normal level? How can you still think that you are reasonable person with normal resources with normal, thinking that you are not insane, or you are not abnormal or anything like that? So, she came up with this, she kind of identified in, in one of her studies, six strategies, that the patient or sufferers kind of use, how do they reason for that, despite the illness. I'm a good citizen, or just a normal, clever person. So, this kind of emphasizing the dimension of demand sense of being a good citizen or being someone who promotes the rights of these vulnerable people. Those kinds of strategies were identified in the study.

 

Aaron Goodman  44:13

 Hi, just pausing briefly to say thanks for listening to the chemical sensitivity podcast. You're listening to Episode 33. It's called Conversations with Doctors. I'm speaking a Suvi Kaikkonen. Suvi is a linguist who lives in Finland and specializes in interactions and conversations people with so-called contested illnesses, including MCS, have with healthcare workers, including physicians. Thanks so much for listening. Hope you get a lot out of the conversation and this episode, please subscribe where you get your podcasts. And if you'd like to support the podcast, please find links on the website chemicalsensitivitypodcast.com. Thank you for your support. Please help us continue making the podcast available and creating greater awareness about MCS, thank you so much. The podcast belongs to the community. And the purpose is to advocate for all of us. And your help means a lot. 

 

Suvi Kaikkonen  45:30

And this notion of I'm a good citizen, I haven't done anything wrong, you know, feeling maybe defensive or needing to explain oneself that I'm a, I'm a good person, is that the sort of preparation or strategy that people go into the doctor's office with, in the face of, you know, potentially being met with delegitimization. I'm still a good person, because it's sort of turned on us. Like, we're the problem.

Where the interaction studies come in. And it's very, like, fascinating, because when, when scholars have been investigating, like the interaction between doctors and patients just in primary care. So what comes up is that actually, we think that you just go to the doctor, you say what's wrong, and they ask you questions, diagnose it and give you a treatment. That is very kind of simple, simple endeavour. But what has been shown by conversation analyst scholars is that any consultation is packed with these experts and moral expectations from the patient's spot, I mean, like, expectation that target the patient's conduct. And this is where the kind of IMST liquid citizen I'm a reasonable person comes in, it seems that each and every consultation, not, I couldn't tell every but I can say that it is very common that patients especially in the beginning of a consultation, they kind of they attend this moral expectation that they should present their problem as such that is, that they need medical help. They have been responsibly kind of observing themselves, in order to know that this is the point when you have to go to the doctor's office, that kind of that they kind of tell their story. 

They'll talk about their symptoms in a way that makes it clear that I'm a reasonable person, I wouldn't come here if it wasn't necessary. I only come when I have to. I know that now I have to. I haven't been observing myself too intensively. I'm not the one who goes around and it's like, do I have the feeling in my lungs? Do I do I? Don't I, I feel a little dizzy. That they are not kind of hypocontrac or hypochondriac. Nor are they too ignorant when it comes to their health. They don't come too soon, but they neither come too late. So actually, endo SFRs do this. But it seems that they don't do it because they are indoors, indoor surfers, they do it because they are patients in the doctor's office. And this is what I expected from them. So that's kind of the moral work, which is really like under beneath the surface of interaction in the doctor's office, and yet there and you have to deal with the problem.

 

Aaron Goodman  48:43

Yeah, it's so loaded, it's so pressurized, and with the size of we could just, you know, have an opportunity to go into these encounters with doctors and just feel less pressure that we don't have to rehearse these in our heads. And, you know, and just be honest with what it is. And for me, I feel like the pressure that I feel is around will they believe me or not? Will they sign the paper that will allow me to continue to go to my work? You know, to get the accommodation that I needed? Yes. They'll they tell me that no, MCS is not real. You're making this up, get out of my office, because we've all had that. So I feel like that's the pressure that I feel to be to be good, you know, and I make an effort to, to dress well, and to and to smile and to be and I'm like why am I doing this? 

 

Suvi Kaikkonen 49:45

Yes. It's not my duty in the first place like, yeah, and this is something that studies held that people would contest the databases to, that they are very careful in how they present themselves. Exactly. How do I dress? How do I speak? How do I present? What do I disclose? They are very common. They seem to be common questions for people who suffer from contested illnesses. But it seems that they are they are not unique to people with contested illnesses, maybe they how do I dress? How do I present that might be, but also patients in primary care seem to kind of carefully think about how do I put this and one way to do this is like put it into a story, make it a story, at first I thought and, and that what I at first thought would be something very casual, something normal and harmless. 

And only then by the time given to evidence, I realized that there must be something else something that has to be doctored something that has to be brought to the doctor's attention. But again, this is not unique to indoor patients or patients with contested indices, as it is a conversation analyst. Studies show that this kind of structure that at first, I thought, and now I have come to realize it's used and deployed by the patients of just casual, that kind of, yeah, basic conditions. Yet I think that it is amplified in this case that my patients, when I looked at the videos and analyzed them, it seems to me that what the contestants of the illness bring in is that it intensifies this work, that would be there anyway. But now it's more intensified. It's more intense.

 

Aaron Goodman  51:51

That's helpful to hear, because the stakes are very high. Right? Like yes, exactly. If I go in with, you know, potential diabetes or broken bone, you know that they will not dismiss me on that front. Yes, you know, they can test it. But with MCS or sick building syndrome, you know, the chances are, the doctor will dismiss me. Yep, there's a fair chance.. And it's one doctor to the next and those encounters can be very traumatic. So, you know, you're a linguist. What do you see, you know, without getting into too much detail, but what stands out for you perhaps about the language you talked about? The stake, why said the stakes are higher, but you said it's amplified the sort of pressurized situation, but what comes up in terms of language Finnish, I don't know if it's Finnish, maybe it's universal.

 

52:56

It might be who knows? This is so interesting, because when I started my research, having all this that we have discussed today, in my mind, I definitely thought that I was going to look at doctors and patients arguing, they are having quarrels, they are disputing traumatic things happen. This was my expectation. And I was so surprised when I went through the data, I have 75 hours of it what sounds like 90 hours. And I went through and through and through. And I was like, where is that? Where are the portals? Where are the arguments that I'm still not there? And at the end of the day, I started to realize that I was not going to find them. Of course there might be an arguments in in the consultations that hasen’t been recorded. There's a fair good chance for that. But it seemed to me that what is rightfully perceived as disagreement and de legitimization, it is still quite harmonious or somehow friendly when you look at it as a conversation. 

So as I become more skillful in analyzing the data, I can put my finger on that this is where the deleted mutation comes in. I can do it, but it's not. It's very subtle. Everything is very tacit and very, very friendly. Sometimes not I have to say one or two cases when it is more overt. But in the rest of the cases, and I do have many of them. It is very subtle, and doctors and patients they seem to collaborate in order to keep it that way. They seem to they seem to like they seem to have a mutually shared understanding that we have to do this in collaboration even If we, at some point we disagree in many points, we don't we agree at some points. It's kind of a very sensitive approach to a disagreement. And if it's this way in Finland, which is like, quite a straightforward culture in when it comes to ways of speaking, so I might only imagine how subtle it comes when you go to the U.S. or to Canada.

 

Aaron Goodman  55:24

Well, you mentioned Finland culture, or Finnish culture may be very much like us. But when we talked before I was sharing from Canadian culture, and it's hard to generalize. But you know, it tends to be very polite, and I think it, you know, in my experience, sometimes it doesn't strike me till long after I've left the doctor's office, or maybe on the way home or that night, which happened to me fairly recently, where I realized that there was de legitimization that happened in that in the office, and I also tried to practice non-reactivity. And, you know, there's a power imbalance too, right? Do you find that it might just be an, I'm not sure how much psychology you bring into your research, you bring the social world at all? So what is it that, you know, is it the power imbalance that comes into play where a person with the illness doesn't have the courage or the ability in that context to push back? It's difficult to do.

 

Suvi Kaikkonen 56:34

Yeah, this is a very important question that the power issues, the approach that I have been using the conversation analysis, it kind of cease power from a slightly different angle, it kind of when you think that doctor says something, or ask that, when did these symptoms start? And then the patient answers that they started when I started at work at my new workplace. So you can see that the power is not only at the doctor side. So it's not that the doctor cannot direct the direction of the conversation with their questions, like, uniformly or solely, that the patient can also like when they use the next turn of talk, they can, they can take a slightly different direction. And that is where the power is from the conversation analytic analysis analyst perspective, that it's in what we say and how we respond and how that directs the question directs the conversation to the direction of where we want it to go, basically. 

And it kind of gives a little bit like more balanced view of power, that it's not only something that lies with the doctor, no matter what, that it's in the conversation exactly, as you say that you have practiced, non reactivity, that's one way of you can think that too, as one way of exerting power. That it creates a certain kind of context for doctors. Talk, if it's not, if you don't acknowledge it, if you don't confirm or deny or do anything. So they basically have to keep talking. So that's kind of so beyond that. I couldn't go with my data with power.

 

Aaron Goodman  58:57

Right? And so how do you find people are responding when delegitimization happens? They're maintaining politeness being cordial, recognizing they need that partnership, doctor, or person with the illness to continue needs to be amicable. Some may not. So what is the range of responses you're seeing

 

Suvi Kaikkonen 59:23

in cases of delegitimization. Patients usually post pushback, but they do it very gently. They do it by returning to their line of argument. So, say that the doctor is suggesting that stress might play a role in the symptoms. And when I say delegitimization, doctors usually don't give alternative explanations that this is not this, what you thought it is, instead, it's kind of an addition to have what you thought, or there might be also this or that that kind of much more gentle interaction or moves. But patients are usually pushing back by going back to their, for example where I said that you might benefit from, from going to describe treatment that gives that kind of psychological or psychosocial support, which kind of isn't exactly saying that this is psychological, but it's kind of hinting or alluding that this has psychological dimensions. 

So what the patients then do is they revisit their symptoms, and their link with the buildings, they say that they kind of make an effort to present the symptoms, severe, and building-related. Yeah, and they did, they wouldn't know, they wouldn't do it in a way that kind of confronts what the doctor said, they would do it in a way that kind of seems that it aligns with the doctor said. Yet, when you look at the content of their talk, you can say that they are gently pushing back. And even if it's gentle, the doctors still recognize it, they do understand, this is what you say, kind of, even if it's subtle, you can recognize it. And you can react to it if you choose to.

 

Aaron Goodman  1:01:28

But I think what people listening might, well will have had that experience of being told, take this anti anxiety medication or, and I think a lot of people will, would and have, you know, interpret that as delegitimization. And then do you push back against that?  Because I think that maybe a lot of people would probably see that as the doctors not recognizing the connection that you're referring to the building, it's when I'm in the building. Or when after I leave the building. And when I'm not in the building, I'm fine. Right? And that is their rational.

 

Suvi Kaikkonen 1:02:10

This is exactly the core rational of the patients. They are not just coming to the doctor's office and kind of saying that I have this they have reasons to think so like and they have, well wait, those reasons. And kind of what I have identified in the data is exactly what you say that they have this there. They think that it's building-related because it occurs in the building and is absent elsewhere. And my suggestion to the doctors who consult these patients would be that, if they like on the basis of their medical training, if they truly think that there are some other things involved, and there might be who knows. So they should address the core rationale of these patients, that whatever they come up with, should somehow explain why the symptoms or cure in the problem building and are absent elsewhere. Because this is where the patient's irrational lies.

 

Aaron Goodman  1:03:23

Yeah. And just so people listening like you, you recognize it as a real illness. What is your thoughts on the illness? Do you think buildings really are making people sick and chemicals are making people sick?

 

Suvi Kaikkonen 1:03:39

I do think so. I also think, and you have to keep in mind that I'm not a doctor, I have no medical training whatsoever. But I've read the literature quite a bit. And I have become convinced and World Health Organization is also convinced that sick building syndrome exists, I mean that the symptoms that are related to building are biology of biological origin, there is such a thing. There is no question about that, scientifically speaking. But then when it comes to individual patients who come into the office with their diverse situations in life, we don't know what is there. Knowing how we kind of creature human being is a whole thing with all those dimensions, the bodily, the psychological, social, whatever, you name it.

 So I've become a quote like, along my process of the research I've become less willing to judge and separate those dimensions from each other, and more willing to just think that we have to help this patient no matter what. That it is, at many times it's fruitless to, to kind of get stuck in this. This is about that, or could it be about stress at least? All my symptoms get amplified when I'm stressed. For example, our house, there is a lane for airplanes to take the airport, it is near. And every time I am stressed, I am so disturbed by those noises. I'm like, could you go away? Of course, they wouldn't. But I feel so bad. And I really like my ears. And those airplanes come very, kind of very intensely. But when I'm not stressed, I don't even know that there is that airport? What airplanes? No, I haven't heard them. Sure.

 

Aaron Goodman  1:06:01

I think a lot of people listening and I just had a conversation recently with someone with MCS who said the very same thing that their level of stress, you know, can aggravate their MCS.

 

Suvi Kaikkonen 1:06:13

Yes. And yet, it doesn't omit the fact that there can be like physiological causes for the illness. And it seemed the same with all like pain. Whatever if it's the ear infection, that’s why you are in pain. So if you're stressed there is a good chance that you are in more pain than that. In that case, also, though, I have also become a little less willing to think contested in this suffers as something completely different from other patients. They are patients who come to the doctor's office with their needs, and something has to be done.

 

Aaron Goodman  1:06:55

As a linguist and social worker previously, do you have any recommendations? Is that part of your research? You know, do you have recommendations for doctors for people with multiple chemical sensitivity or signal syndrome? And just because you mentioned the World Health Organization? I'm not I don't think the who recognizes MCS?

 

Suvi Kaikkonen 1:07:21

Yeah, that Sick Building Syndrome is recognized by them. But not Yeah. MCS might be a different story. Yeah. Thus far. Yeah. I do have recommendations. And, yeah, for the doctors. It seems that in those cases when doctors suggest other reasons for the patient's illness. One thing, or actually, three things seem to aggravate the resistance by the patients. So if you, although you've done it very gently, if you kind of normalize the patient's condition, if you kind of put it in the frame that this is something harmless, something mild, you shouldn't worry about it. There's nothing wrong with you. Even in the cases when it's when the tests came normal back. 

So you kind of have medical reasons to normalize the patient's conditions. So that is where this is the number one that triggers the patient resistance. So don't normalize their condition. Don't say to them that they're okay. Because they are not even if your tests came back normal. So they are not okay. So, I do realize that doctors like I do see the doctor is saying what do you do if the tests came back normal? You cannot lie to the patients and say that there is something wrong with them. I do realize that. But could there be some other ways? Some that don't delete demise the patient's experience, because normalizing seems to do with that. Yeah, so that would be something for the doctors to consider, to ponder on. I don't know how it's done. But I'm sure you and you kind of recognize this kind of normalization.

 

Aaron Goodman  1:09:27

Well, yeah. Because if it just relies if the validation solely relies on a test, you know, there isn't a test for MCS, right? We have to, there's an assessment called queasy, you know, which Dr. Claudia Miller and colleagues developed, which you're probably familiar with, right that we self-assess, and we answer those questions and bring that information to doctors. So, there isn't yet a physiological test, right? They can blood biomarkers or an x-ray, you can do so failing that. Like, wouldn't it be nice if doctors just took us on our word at our word? Rather than saying, No, you're not. There's nothing big to your point. No, you're fine. No, in fact, I'm not fine. As you're saying. Yeah. Okay, good.

 

Suvi Kaikkonen 1:10:20

Yeah. So that is one that is. And the second to which patients are sensitive to in terms of resisting pushing back is, is when they feel that their moral soundness is, is questioned. And that comes to question when, for example, sometimes doctors and doctors aren't bad creatures they are, they're sitting in their offices, receiving patients every day trying to do their best. I'm quite convinced of this, at least in the cases that I've looked at. But they sometimes do things in goodwill, that can be interpreted from the patient's perspective as questioning their moral, for example, saying something like, it might be that the symptoms are less on holidays, because you will feel lighter, you are in good mood. And it might be who knows, but the interpretation by the patient seems to be that, okay, you are telling me that I'm a lazy worker, I am work-shy, I want to avoid my duties. 

They are very subtle, they are deep in the conversational details of the language. But when you start to realize you can put your finger on it this is why the patient resists that there seems to be nothing. Specific, indeterminate in how the doctor says what they say. But yet there is this underlying moral judgment. And I'm sure the doctors didn't mean it. It's not that they wanted to question the patient's morals they have no reasons for that kind of thing. But this is the like, the moral thing is, is the second what triggers the resistance, so try not to.

 

Aaron Goodman  1:12:25

So the moral can manifest in like a judgment that a doctor can make on someone, for example, you're not doing enough exercise, you're not eating healthy, you're overweight. You're not taking care of your, your skin, you're hypersensitive, well, that's not a moral thing, but it feels like a human thing, sensitive, a moral thing, like you're like overly sensitive.

 

Aaron Goodman  1:12:56

Yes, I mean, I'd never want to center myself, but a doctor recently told me that it seems like you're oversensitive to many things. So you're probably just being oversensitive to this thing. And I've felt like yeah, gee, also do you see that? You said that's a moral criticism in your viewer as linguistics.

 

Suvi Kaikkonen 1:13:25

Of course, I can’t tell how the doctor intended that to be heard, but it seems to me that you perceived it as having this kind of moral judgment. I think this is the most important thing because there is no other thing like listening to doctor's talking about what you thought is the most important thing. This is what conversation analysts do they kind of look and what is important and at what is relevant for the participants and they try not to bring their own interpretations their own value of the data but see. How did they proceed, who said this, and this is what happened next. So we can see that it didn't go very well even though Percy there wasn't anything particularly wrong in the in the doctor's talk, for example,

 

Aaron Goodman  1:14:17

And as you said, it can be very subtle, right? And doctors are usually highly intelligent. They don't want to offend or have a patient who rocked in the office or has a car. So maybe that's why when we leave the office, I don't want to generalize everyone when I left the office recently, it only dawned on me later that assuming. I wonder if as a linguist if you are looking at medical gaslighting, right, so gaslighting, I had to look it up recently, but I'm just looking@health.com and that it reads. Medical gaslighting happens when healthcare professionals dismiss symptoms you report to them who don't take you seriously. Melo gaslighting, it's we've kind of what we touched on. But is it something that's in your realm of exploration as a linguist?

 

Suvi Kaikkonen 1:15:13

I couldn't exactly think of a case where this happens, but I'm sure that this is something that people experience, which is true for them. But it might be a phenomenon that is hard to kind of be identified in the data because I would assume that it's quite subtle and that it wouldn't be that doctors said that its in your head, or your imagined this. So it's, it's done in more subtle ways. And I wouldn't say it's a problem in at least I haven't identified it, I guess I would have if it was there.

 

Aaron Goodman  1:15:59

Okay. And you were talking about two different ways these conversations happen in the office. But I think it was very comprehensive. So maybe, maybe I could ask you as we towards wrapping up conversation. Are there groups in Finland who are advocating for more for change? You know, when it comes to the doctor and the person who is ill? And do you see your work as a form of advocacy?

 

Suvi Kaikkonen 1:16:33

I do see my work as a form of advocacy, and also almost like activism, I would say I advocate for both doctors’ and patient’s rights or rights might not be the right way to put it. But yeah, I find myself being both sides because I think that is what is needed. it has to be because this is where they form the entity, this is where the interaction happens. It wouldn't help if you just only thought the doctors best or the patient's best, because they are doing it together, they are collaborating even when they're disagreeing, they have to collaborate, they have a business to be accomplished in the doctor's office. So, in that sense, I tried to strictly remain within the frame that I have chosen, which is the conversation on a lake la analytic approach to interaction meaning that I cannot bring my own ideas to the data, I kind of foreground the participant’s own perspectives. But I do feel that this is at the society level, this is an important topic and I have one tiny, tiny contribution to be made. I feel that way. But there are patient organizations, yes, who advocate the rights at the group level, this mold refugee, which I mentioned to you. 

Then we have like pulmonary associations and indoor air a range of associations, it kind of reflects the fact that we are in trouble with this. And then I have to say that the government is not like just waiting for things to be somehow done, they are also doing things, we have governmental programs that are trying to get our buildings renovated, healthy, and people treated. And they do know that we have different approaches to the problem. But now they have established or called together a group of scientists and patient organism session representatives and parliament members to discuss what we can agree upon within this within this issue. So there are efforts, I'm certainly only one tiny part of the endeavor.

 

Aaron Goodman  1:19:46

I feel like you're very kind to doctors, you know, so is there anything that you've given your research findings that you think Doctors could do better? I think I wouldn't ask you what could patients do better? Because I think patients generally bring their authentic selves, you know, and have the responsibility

to conduct themselves in a specific manner. When they come to the doctor's office, I agree, we have an illness, we want to be validated and receive treatment and support and be and care. And sometimes we don't get met with that. Is there anything that you have learned from your research that you think doctors might benefit from in their encounters with people with chemical sensitivity, environmental illness, or sick building syndrome?

 

Suvi Kaikkonen 1:20:44

There certainly is. My analysis has shown that doctors can do a lot in how they basically put their questions. They can help significantly the patient to build their case, to build their narrative. So if we think that doctor at the beginning of the consultation doctor can ask “What brings you here today?” which is like very open question. Then they can say, okay, I read that you have these headaches and those kinds of things. Or then they can go and say that you had this building related issues. So you can realize that each of these, of these ways of asking, the last one brings the patients directly to the topic. And that kind of opens space for them very easily, very effortlessly, where they can bring forward the issues that they feel that are relevant for this specific visit. 

This would be something that the doctors in ways that they pose them, it makes a huge difference. It's almost like funny that of, for example, I have found out that when they talk about buildings, and if there's something wrong with the buildings, so the doctors way of asking about buildings kind of predicts how, how, frankly, or how straight, the patient will tell about the building as a source of their problem. So if only in the cases that the doctor asks directly about the building, has there been problems? So only in those cases, patients disclosed the problems, otherwise, they otherwise they do it much more indirect ways they kind of show evidence, they might tell that some renovations were done in the buildings, which kind of suddenly implies that there might have been problems. But it's almost like funny that, of course, the patient, in principle could say anything. But this is not how the conversation goes. There are normative issues in in how you conduct a conversation. It seems that the doctors ways of asking make a huge difference. Yeah. And that would be something that they could like pave way for the for the patients to build the case.

 

Aaron Goodman  1:23:34

Yes. And I if there is any degree of skepticism about whether buildings cause people to be sick, then that doctor is unlikely to pose that question. In the same way that if a doctor does not believe that an air freshener could cause someone to have a chemical sensitivity could have a reaction, right? So because not every doctor is convinced, I'm guessing in Finland, right? So it depends, Doctor by doctor which path they want to go on. And we can't expect a doctor who doesn't believe in the correlation between the sick building and an illness or air pressure and sickness to ask that question. Then they would ask him or some question about the symptom. How was the headache as opposed to what have you been breathing? What air or what cleaning products are you using, right? They're not going to ask that.

 

Suvi Kaikkonen 1:24:38

I don't know. I haven't asked them what they think I've only looked at what they do. So there is a difference in that. You might be right, you might not. But at least there are other issues involved and one of them is the type of consultation. The question that the doctor asks, for example, in the beginning of the consultation is not selected freely from the buckets where the options are, or only on the basis of do I personally believe in this or these endo issues. But one thing that is involved is the type of consultation that if it's like, is it a first visit? Then the questions on follow up visits tend to be different. Have I read the patient record and I already know that the course is related somehow to buildings? So it kind of allows me to ask directly about the buildings. If I didn't know anything about the code or reason of the visit, I would not like to ask directly about the buildings, I couldn't because it could be what else, like an ear infection that the patient comes in for.

 

Aaron Goodman  1:25:59

It's been really fun. And I think it's going to really resonate with listeners, I just know it because we all have our individual experiences with this. Your insights, I think are really important and really interesting. So thank you, Suvi. 

That brings us to the end of this episode of the Chemical Sensitivity Podcast. Thank you very much to Suvi Kaikkonen for speaking with me. We release new episodes twice a month, subscribe wherever you get your podcasts. The podcast is produced by me Aaron Goodman, with assistance from Kasey Walstra. 

I'm grateful to listeners who support the podcast. If you'd like to make a monthly contribution or a one-time donation, please find links on the website. Chemical Sensitivity podcast.org. Your support will help us continue making the podcast available and creating greater awareness about MCS. Thank you so much. The podcast belongs to the community. And the purpose is to advocate for all of us and your help really means a lot. 

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