Bonus Sample: From Rabbit Hole to Research (w/Jaigris Hodson)
Our Listener Story this week comes from Dr. Jaigris Hodson, Associate Professor and Canada Research Chair for Digital Communication for the Public Interest at Royal Roads University in Victoria, British Columbia.
Dr. Hodson shares her pandemic journey with inflammatory breast cancer, and how, even as a misinformation researcher, she was vulnerable to the hope sold by alt-health grifters. After completing treatment, she turned her research attention to cancer misinformation, and is now innovating research methods for analyzing how emotion drives misinformation consumption and virality.
Show Notes
Jaigris Hodson | Royal Roads University
The Podcast: Digital Public Interest Collective
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Now, today my guest is Dr. Jagris Hodson, Associate Professor and Canada Research Chair in Digital Communication for the Public Interest at Royal Roads University in Victoria, British Columbia.
Jagris, welcome to Conspirituality Podcast.
Thank you for having me.
Now, really interesting to speak with you because you are a digital communications expert who has also made like a big leap into studying online health misinformation.
And obviously that's gold for the kind of territory that we cover.
But our communication started with you sharing parts of a very personal story.
So maybe we can start there in the dark days of the pandemic.
So I think it helps to have a little bit of background, more than just the dark days of the pandemic, which obviously looms large.
But also in the province of Canada that I am in, and actually I think in Canada generally, there is some limitations to public health.
A lot of people can't get a family doctor.
Right.
And in my province, I think almost half of people I can't get a family doctor.
And so I've been here for almost a decade with no family doctor.
Wow.
And I mainly manage that the way many of us manage that.
That is, you know, I made sure that I ate really right.
I was, you know, very into health and fitness culture.
I did Thai boxing for a while, vegetarian, the whole nine yards, all the things that you're supposed to do to keep yourself well.
And, you know, in doing all of these things and then, you know, obviously doing all the things they told us to do during the pandemic, avoiding crowds, wearing masks, what have you, I considered myself to be, you know, a sort of peak health condition and not the type of person that would have to worry about, you know, cancer, especially at the age of 42.
Right.
So, yeah, in 2001, right in the middle of the pandemic, I started to develop some, you know, sort of strange symptoms, but initially brushed them off because I'm not that person.
You know, I was taught, right, by wellness culture, I am not the person who ends up with a cancer diagnosis.
But eventually the symptoms turned into something I couldn't ignore.
I say eventually, but it was like over a period of a month.
It was quite quick and quite aggressive.
And so I went to a walking clinic.
and they referred me for a diagnostic mammogram and immediately, immediately I went to a biopsy
and it came back a stage 3, very rare, very aggressive inflammatory type of breast cancer.
And I was floored.
I was just lost.
I, you know, I have no doctor and suddenly I'm in the system and, um, the system was overloaded at the time as well because, you know, by the middle of COVID, um, people were just burning out and they were leaving or they were being, you know, reassigned nurses and, and what have you.
Healthcare workers themselves, you mean, are burning out and leaving, right?
Yeah, that's correct.
So, you know, nurses is the prime example.
But my oncologist actually also burnt out and left during my treatment.
And nobody told me because there was nobody, I guess, in the system available to send me even a letter or call me and let me know.
But backtracking just a little bit, it also, this lack of resiliency in the system led to delays in my treatment as well.
So I'm dealing with this very aggressive cancer.
And yet, I had to wait nearly eight weeks to start treatment.
And the recommendation, the guideline is you should be starting treatment within two weeks.
So in the meantime, things are ticking.
The tumor is growing.
And I am sitting in my house with this diagnosis over my head and thinking, what is going on?
So, you know, during that time, partially as a result of just feeling so lost, and then also partially as a result of because of COVID, there were no social supports available.
So there were no support groups through BC Cancer, British Columbia Cancer,
where I'm located, that would have been available.
And my wife couldn't even join me for appointments.
Like she wasn't allowed.
So there's no sort of access to, you know, the familial medical advocate that you might want to have
in those situations.
No, it was very lonely and very overwhelming.
Yeah.
And so you go where you can.
And as a digital researcher, I am a highly online individual.
And so I started searching breast cancer hashtags, mainly on Instagram.
I'm not currently on Facebook, and I also tried Twitter, but Instagram turned out to be the place where it was easiest to find other people under the age of 45.
Because that's another thing too, right?
A lot of the people around you who you see with cancer, they are decades older than you are.
And so you can't connect on things like, what do I do about my career?
How do I pay my mortgage?
You know, some people have child care responsibilities and those sorts of things.
And it's just not as reflected in somebody, say, over the age of 65 who has this condition.
But I found people like me on Insta and started following them and voraciously, voraciously looking for, you know, what are people going through?
What can I expect from chemo, for example?
You know, is there anybody else with my kind of cancer?
What kind of treatment are they getting?
What should I be thinking about?
What questions should I ask?
Et cetera, et cetera.
And this led me to also some not so great information.
Before we get there, I wanted to ask about the sort of feeling state of that delay.
You said that, you know, the recommendation is that treatment starts within two weeks and you wound up waiting for eight weeks and I'm thinking that a lot of this Instagram Immersion is happening or beginning to happen during those eight weeks.
But at that same time, are you also feeling the urgency of your symptoms increasing?
Yeah, so I mean, I don't know if this was all in my head, right?
You can only know what you think you sense, but it is happening through a cloud of absolute terror, you know, as you can imagine.
So I felt like At the beginning of my diagnosis, I could not feel my lymph nodes in my armpit, the neighboring lymph nodes.
But before I made it into treatment, I swear they had grown and I could now feel these little rocks in my armpit.
And I said later to the oncologist, they were noncommittal, like, you know, like, could it grow that fast?
I mean, I don't I don't know if it was all in my head, but but it did.
It did feel like they were growing.
Well, it's not just that it might be in your head, but that there's a feedback loop between trying to research your condition in the absence of care and then maybe palpating your armpit deeper and deeper day by day until you finally feel something.
Yeah, that's that's so, so difficult.
Yeah, and I remember just, you know, lying on, you know, the floor of my gym after a workout, because the one thing my GP did tell me was, you know, keep exercising up until you can't, because that will help you.
So then, of course, I, you know, as an overexerciser to begin with, I was constantly in the gym.
And I remember lying on the floor and stretching.
And then, yeah, just, as you say, palpating my armpit and just thinking, this is, this is untenable.
I can't, like, it's my own personal, you know, nightmare.
Okay, so you start to be led by the algorithm into some alternative health territory.
So what's the first thing that comes up?
Well, you know, lucky for me, I had studied COVID-19 misinformation prior to my diagnosis, so I had a little bit of a higher sensitivity for like bullshit, really.
And so, you know, a lot of things that came up like, you know, subscribe to my plan for, you know, help with, you know, relieving your cancer symptoms or whatever, you know, it was just an automatic block.
But the way it came through was a lot more insidious.
So, you know, as I am following other women who have experienced my, or similar, diagnoses, they would start posting about things that they were doing.
And it was almost that parasocial, you know, I feel like I know them and they're, you know, I didn't know them and they weren't my friends at the time.
Although I did make friends later with some of them, but it was that parasocial at the time interaction.
You feel like you kind of know them and you're like, oh, that's working for that person.
So maybe I'll look into that.
And for me, The thing was fasting.
Now, I have to say fasting, there's limited studies that do show maybe fasting does work for some forms of cancer.
Yes.
Has it been tested, you know, in large clinical trials on my type of cancer?
No.
And in fact, fasting can also be really dangerous, especially if you're not monitored by a medical professional.
So maybe fasting itself wasn't so much the problem, but me, you know, jumping into it, Without supervision and without having the proof that it definitely is a good idea for breast cancer, that's not a smart decision and it's very wellness adjacent in terms of a lot of the woo stuff that you get.
I was fasting for 36 hours around my chemo treatments.
To give you some credit, though, I'm wondering how that particular plan or intervention made sense on some level, perhaps intuitively.
Like, what was it about fasting in particular that made you feel that, you know, even in the absence of solid evidence, it made sense?
Yeah, so It was a sense of control.
Like, I need to do something.
Right.
I feel really out of control.
And like, you know, you want to make sure that if you're going through chemo, right, that you're doing everything you can to make that chemo take.
And the way it was presented to me from this person that I followed on Insta, they said they were fasting because it improves the effectiveness of chemo.
And indeed, again, if you look up the limited scientific literature on the topic, that seems to be what it suggests.
But some of it is, it's not sponsored research, but it was research done by a company who specializes in fasting, like they make supplements for fasting.
Excellent!
Excellent, that's fantastic!
Yeah, and looking back now, I'm like, why did you trust those particular scientific studies?
But at the time, I was grasping for anything that would allow me to feel like I could do something.
Was there language around, the tumor is growing, you should starve the tumor?
Luckily, um, not in the studies, right?
Right, but on Instagram.
Yeah, yes, yes, there is a lot of language about, and it's not, you know, necessarily, they're not focused on sugar now, although I did get a lot of from friends and family, you can't eat sugar, you can't eat sugar, and, and no, like, that's not how any of this works.
But it sounds virtuous.
Yeah, it sounds virtuous.
But yes, there is that idea that if you starve the tumor, I'm saying air quotes, if you starve the tumor, then it takes up more of the chemo.
Yeah, that was the idea.
Yeah, and interesting, it just occurred to me that of course you can't eat sugar.
It's almost as if, I guess the first thing that came up for me was that you're supposed to enter into a kind of dietary lint in order for the chemotherapy to work, that you're going to sort of restrict yourself from something that would be naturally sort of, you know, nurturing or pleasurable or it might be involved, you know, in comfort foods.
And that's going to be effective.
You're going to be doing something.
Yeah.
And you know, that is a really prominent theme in some of this stuff.
And it's also very dangerous.
You know, you wouldn't think, okay, you know, whatever, you're eating a healthy diet, but it's on chemo.
There's a lot of times you can't eat at all.
Right.
So if there is anything you can shove into your body, you know, ice cream, hamburgers, whatever, you need to eat that thing.
Because, you know, it's very dangerous to lose weight on chemo.
You know, the people who lose weight tend to have worse outcomes and this is supported by the literature.
And in fact, when I was fasting, at one point about midpoint in my chemo cycle, I passed out.
Oh, right.
And that was extremely dangerous.
And after that, I think it sort of like knocked some sense into me because after that, I had a discussion with my wife, who was never a fan of the fasting to begin with.
And we decided, you know, for the rest of my chemo cycle, I wasn't going to try this anymore.
Now, can I just ask, this might be out of scope or too personal, but in your relationship, was that the first sort of moment where there was a kind of skepticism that came from your partner, or, you know, maybe we should look further into this, or I know that you're trying to do something, but I don't know, like, or was that something that was a theme all the way along?
We were both scared and sad and lost and I think she gently threw out Um, the, the, the fasting adventure, um, gently would say, are you sure you, you have to fast that long, you know, or, or things like that.
Right.
Um, and then I, uh, I would say, no, like I, I, I have to, I, I just, you know, I, I have to, uh, and then, and then, you know, uh, they took that as, uh, okay, now I'm just gonna let, uh, you know, my wife, you know, do what, what she needs to do.
But I think there was a concern, almost from the jump, but especially the farther we got along.
Because I would start with a 12-hour fast, and then a 24-hour fast, and then a 36-hour fast.
And I think as it increased... Because longer has to be better, right?
Longer has to be more effective.
Well, again, in the literature that has been sponsored by companies who do this sort of thing...
It was suggested that longer might be better.
Sure.
Because, well, you'd also be taking more supplements during that time, right?
Yeah, I guess, yeah.
You know, it's just, I really feel for the relational thing here because I don't know, it seems to be like, I imagine it is a universal human and familial and domestic impulse that when your partner is sick that you want to give them food, or to make food for them, or to watch them enjoy food.
And if that's not happening, that might be really hard.
Yeah, yeah.
And I think also, you know, I did lose weight.
Like, how could you not?
I probably would have lost a little bit of weight on chemo anyway, because I was so nauseous.
But of course, the fasting didn't help.
And so I think you can see, like, you can see the changes in your partner.
And yeah, that's got to be hard.
Like, looking back now at photos of myself during that time, it doesn't even look like me.
Yeah, amazing.
Okay, so you said that part of what going into this information and beginning to adopt some of the practices did for you was that it provided a sense of control or agency at a time when you feel that everything is out of control.
Now, was that a sense of empowerment or agency that you then had to surrender when you were able to get the chemo care that you needed and that you were fully committed to that program?
Yeah, I think it's sort of the opposite.
The reason why I grabbed onto it so tightly was because everything else felt out of control.
You know, first of all, it felt like I had been fed a lie, right?
Like the lie being, if you do the right things, if you exercise, you eat a good diet, you know, you brush your teeth and floss every day, that you're not going to get these things.
And now I realize that it's, I mean, a healthy lifestyle is important, but luck also plays a role.
Yes, isn't that the kicker, right?
Yeah.
Like, you can't commodify luck or transcending luck.
You can commodify the self-project, you can commodify personal responsibility, but you really can't sell luck.
I mean, you can just in a pure online gambling sense.
But I mean, I think it would be very insulting for most wellness influencers to have their marketing compared to sort of like, you know, online slot machines, which is kind of, you know, there's not a lot of daylight in there.
Oh, agree.
And I don't think that healthcare in North America, at least, is doing itself any favors because to cover over cracks in the system, you get a lot of messaging about healthy lifestyle.
I haven't really thought about that, actually, that it might be that, you know, we have these neoliberal forms of health care, always subject to rationing, always subject to what market demands can bear.
And, you know, well-meaning public health officials will speak into those gaps, but then probably also provide the kind of institutional legitimization for the wellness industry to take that you know, torch and run with it and say,
well, actually, self-care is the whole bag.
And you know that universal health care here isn't really going to take care of you ultimately,
and then it's worse in the States.
Yeah, absolutely.
And so, you know, I see now, of course, all kinds of messages from, you know, BC Cancer, from, you know, Health Canada, etc., about the necessity of individual intervention.
So, you know, do your self-checks, etc., etc.
And, you know, my tumor Didn't even present in a regular way, which I think is part of what allowed me to ignore the weird symptoms for so long.
It wasn't a lump.
It wasn't any of the things that they normally tell you to look for that you think to look for.
And so if I had done self checks, would I have caught it?
I don't know.
I think there's a limit to what we can do.
And without having a regular family doctor who gave me regular physical exams and knew what my normal was and that I was off baseline, I didn't have the individual knowledge maybe to protect myself the way idealistically they would have liked me to.
So I think that was the first part where I needed to gain back that control.
But then also, once you're in the system, Right?
They don't allow you even to specify a good time to have an appointment.
You know, they tell you, you have to be here on this day, and if you're not, you know, you don't have a spot, and the doctor will see you at this time, and sit around your phone for a call at this time, etc., etc.
So you are completely out of control with your schedule.
You are completely out of control with your body.
You are completely out of control of all these horrible side effects.
Right.
And so to me, that was what really resulted in this need to like claw back whatever control I could.
And it was through, you know, obsessive online information seeking that I was trying to do it.
Just to go back to the public messaging for a moment, when you see now this messaging around self-examination, obviously that's not bad advice and that can help sort of fill the gap between GP appointments or things like that.
I don't actually know whether it's standard over a certain age that if you had a yearly physical that a breast exam would be part of that.
But, you know, self-exam should be, you know, decent advice, but I'm just wondering if they should just add another phrase to messages like that, which would be, you know, self-checks are really good and they're not also sufficient and you really need to.
And you really need to make sure that you're in constant, you know, contact with your GP and, you know, you go to all your regular appointments.
But I suppose if they injected that additional message, it would kind of like, you know, it wouldn't fulfill the purpose of, you know, transitioning the health economy towards self-responsibility, right?
That's correct.
Yeah.
And it's also not a very snappy message from a marketing standpoint.
Right.
Right.
Please do this thing, which isn't really sufficient.
Yeah.
It's pretty good.
It's pretty good.
But if you actually have a rare form of incredibly dangerous cancer, it's not going to help you.
Yeah, well and I have two other thoughts about that too, Matthew.
So the first being, in British Columbia about a decade ago, they actually told doctors that doctors were not allowed to bill for regular physicals on healthy people.
So, I mean, you know, I say if I had had a family doctor, but it's more complex than that, because if I'd had a family doctor that was allowed, right, to give annual physicals, and to me that's the most ridiculous thing because, yeah, you have the physical when you're healthy to avoid millions of dollars spent on like chemo treatments because because you have advanced cancer or heart disease or
whatever, right?
And then the second thing is I know that in the states they just change the regulations and they've
told women that if you are under a certain age you don't even need to do your self-checks anymore,
which is like it blows my mind and it blows the mind of every other young cancer patient
because they say, oh it gives you too much anxiety.
Oh, you know, you can't have that anxiety in your life.
That's too much.
And if you go for a mammogram, you don't need like that's extra anxiety and you shouldn't do that either.
And I have just I would be dead.
I would be dead.
Oh, man, that's so upside down, because on one hand, they're saying they're saying don't make yourself anxious by doing the sort of This activity which we've thrown to you as a bone to make up for the gap in care because it will cause you anxiety but then also you're responsible for all of your other health markers and that's going to be empowering.
That's not going to be anxious to tell you to eat exactly what you should be eating and avoid all sugar and exercise your ass off, right?
Yeah, and so it's no wonder that the grifters, there's a fertile ground for them to come in and say, you know, here, since you have to take care of yourself and you don't have a lot of mechanisms to assist you, we're going to give you this supplement.
Okay, so we're going to get to that because that's now your research basis.
But because, you know, we focus so much on spiritual promises in this field, in this landscape, was there anything in that category in the influencer sphere that you were attracted to?
Was there anything sort of Existentially fulfilling or psychologically uplifting about the influencers that you were following that made the practices or the advice seem a little bit more attractive.
Yeah, thank you.
I think that's a really important part of the puzzle.
I remember actually, anecdotally, one of my friends told me while I was in the middle of chemo that, you know, they didn't want to tell me about their problems because I was supposed to maintain positive thinking so that the chemo would work better.
And, you know, I was so mad, but... Because you missed out on their problems.
You missed out on being able to empathize, right?
Well, I don't, you know, you don't want to be just cancer girl, right?
And you know, and you want to be able to be a whole person and a whole friend and like, yeah, be part of their life.
But also this idea, right, that positive thinking will somehow help my chemo.
Anyway, it works for some people.
But that all that being said, you know, you asked me if there was something else that attracted me to some of this content.
And you know what?
And we'll get to this because it's also a big part of my recent research.
I gravitated towards content that wasn't too scary, wasn't too dire, right?
Like, I wanted to see people who were still making it to the gym in the middle of chemo.
I wanted to see people who, you know, even though I rejected that positive thinking from my friend, I was kind of actually looking for it.
