Why We're So Bad at Talking About Illness
- Jul 16
- 14 min read
Watch on YouTube: https://youtu.be/uG9mYDC7qxA
Fourteen years ago I woke up to a number of new friends on social media who all told me that they found me because of Kristen Bell. And I was like, ah, cool, yeah, Kristen. You know, she’s such a goof, that Kristen, always sending people over here.
At that point in the my life I had no idea who Kristen Bell was. So it took a minute, but I finally tracked down in all the different notifications the thing that had started all this. I had written a very raw essay that was making the rounds back then, it was called The Truth About Heroes and Cancer, and one of the people it had made its way to was Kristen. And when she commented or shared or whatever it was that she did, all she said were two words that I will never forget: “wow, powerful.”
Those two words were enough to help spread some very important work further out into the world, and I have always really appreciated Kristen for saying them. At the very same time, I wish to every divine force that exists or may have ever existed that none of what led up to it had ever happened, and many days of my life I have spent in a complete daze, a maddened desperate blur where I’m simply willing reality to be different from the direction my life has actually taken.
And the way that people talk about what I went through is what I want to do some f*cking good about today. You guys, the way we talk about things matters. In psychology, there’s a term called euphemistic labeling, and it describes the tendency to use softer language to tone down harsh concepts so that they’re more palatable. Like when we say that someone has passed away instead of died, and when he say that someone is fighting their illness.
So today I’m bringing the subject of the essay Kristen Bell liked so much together with the current work that I do on this channel. So stick with me for what is about to be a very important analysis of culture, psychology, linguistics, and what makes us human even in the most desperate of times.
In August of 2012, I was diagnosed with cancer. I was 25 years old. There are 18 million cancer survivors walking around in America today. Over two million people are diagnosed with cancer in the U.S. every year, and 88,000 of those are young adults, or people between the ages of 15-39. And fourteen years ago, I was one of them.
For three and a half months, I didn’t know whether or not I was going to live or die. Test after test, things just kept getting worse. It did get me to start some things that I’d been putting off. I launched a blog and built a decent following with it, and that got me started writing professionally and working with some cool people at the huffington post and the Cancer Research Institute, and I had profiles and interviews and did podcasts and galas and photoshoots.
And then somewhere in there, I wrote The Truth About Heroes and Cancer. I wrote it on my blog, Zen of Metastasis, and then it was reprinted in the Huffington Post. And it made its way all the way to Kristen Bell. It got me a nice follower bump, it got me super cool Kristen Bell cred, and it actually lead directly to me getting married. It didn’t get me married to Kristen Bell, which I have mixed feelings about. And we can talk more about that if everybody wants. But another person who’d come across this essay was my future wife.
So what was The Truth About Heroes and Cancer and why is it important to our discussion today? The essay was a dark and gritty slap in the face to the disney-fication of the ways that cancer and terminal illness are portrayed in the media. Maybe it’s ironic that a hollywood actress helped me spread the essay further into the world, because the thing that people miss who write hollywood scripts about this is that there is no happy ending; when you have the cold hand of the grave wrapped around your ankle, you don’t just brush yourself off and walk away clean.
We’re always saying things about how people are fighting their cancer. They’re fighting for their lives, or they’re battling their illness, or they won or they lost their battle. And this is the psychological principle of euphemistic labeling at work.
All the way back in 1978, Susan Sontag wrote that using war metaphors in cancer treatment is problematic because it creates an immense emotional burden in the patient. It’s been a long time since she published the essays that became known as Illness as Metaphor, doing so while she herself had cancer. And now we have a lot more research and many more data points to pull from about whether or not these kinds of euphemisms are valuable, or if they’re straight up harmful.
In 2022, Robert McEachern wrote in the Journal of Clinical Oncology to advocate for the continued use of war metaphors in cancer treatment. He wrote that doing so gives both patients and oncologists agency. He did a big analysis of language inside published oncology research, and what he found was that they’re also riddled with battle language. All the researchers were also using that language. He also described oncology in general as a field where workers must be “donning emotional armor.”
USC professor Norbert Schwartz and former USC professor now at Queens University, Ontario, David Hauser, did actual studies about the effects of war metaphors on patient outcomes. They found that bandying about extreme language like this about cancer which is much more of a prolonged, possibly chronic journey, than a battle, especially these days, all of that lessened a person’s likelihood to engage in preventative behavior. What the effects of war metaphor does is that it makes people more fatalistic about cancer, treating it as a giant terrible decisive battle rather than a genuine health condition that has real risk factors that can be mitigated and monitored.
They also found that none of the marketing or screening PSAs from hospitals that used battle metaphors had any effect on whether or not people went to get screened for cancer. They did find, however, that it increased revenue from fundraising campaigns. The language definitely seems to get people motivated to want to donate, which I guess is nice. When asked how they’d like to see this spoken about instead, they focused on the idea of encouraging preventative health and realistic goals, and emphasizing the journey aspect of the disease. “Journeys require active engagement, are usually enjoyable and lead toward a desirable destination. But they also include obstacles and detours along the way, which need to be managed. Such a framing encourages engagement and avoids fatalism while acknowledging potential difficulties. Fortunately, journey metaphors are becoming more popular in this area.”
One thing I immediately thought of in response to McEachern’s advocacy for using war metaphors is that he doesn’t go into WHY this language is being used, or where it may have come from in the first place. In my essay that I wrote I hypothesized that euphemism in disease isn’t about empowerment, it’s about denial and creating emotional distance from dark realities. And that does a major disservice to just about everyone. McEachern does go on to note that such language can be disempowering when things don’t go a certain way and treatments fail. But again, why do we use euphemism about disease at all? Is it about empowerment, is it denial? What is it?
Some researchers see euphemistic labeling as a kind of deception. Sociobiologist Robert Trivers wrote that deception is “a very deep feature of life.” And we do see in the research that there are what appear to be reflexive uses for euphemism across a number of areas of everyday life. Mostly these are places where we’ve decided we shouldn’t tread in the bright light of day. And these are topics that range from very serious things like death and violence, to going to the bathroom. And “going to the bathroom” is a euphemism. Because you’re not just going there. Something’s happening when you get there.
Sometimes the reasons this happens are sinister. Politicians use intentionally euphemistic language in order to soften realities they don’t want you to see. And a 2021 study from Waterloo University found that this kind of use of language lets politicians avoid the cost of lying outright and also helps them win people over to their side at the very same time. One example of this they pointed out was the phrase “enhanced interrogation,” used in place of just saying torture.
George Orwell talked about this in his 1946 essay “Politics and the English Language.” He wrote that, “The great enemy of clear language is insincerity. When there is a gap between one's real and one's declared aims, one turns as it were instinctively to long words and exhausted idioms, like a cuttlefish spurting out ink.” He also talked about how language was evolving at the time to sway public perception and the culture of unclear language and how it affected understanding.
So what’s the gap here? What’s the real intention when people are using euphemistic labeling when they’re talking about cancer and illness?
A 2018 study published in Lexis - Journal in English Lexicology can maybe help us here. The study points out that the word “disease” itself used to be a euphemism. It comes from old French and Middle English, where dis means cease, and ease, means comfortable. So it’s just itself a euphemistic label which literally means that someone is no longer comfortable. The original Latin word used to refer to sickness was morbus, but that disappeared because it sounded too much like the word for death or corpse, which was mors. Words that replaced it were infirmitas, languor, gravis, and the euphemism male habitus which led to the French word for illness, maladie. The researchers point out that today we’re starting to use even further euphemisms like condition instead of disease, and then in French, even softer euphemisms are popping up like, “un petite probleme.”
What are we afraid of actually saying? The Lexis study points out that in the Middle Ages, people were so superstitious about illness that they thought even naming a particular disease would make it possible for them to catch it. Mental illness was for a long time linked to the spiritual world or devilry, and certain kinds of mental illness were seen as demonic or supernatural, and the forces that caused it could take you over, too, if you got too close. Disease was often seen as a punishment, especially in the intense religious environments of the time. Epidemics were judgments passed on the population by God. The Lexis study points out that a lot of illnesses contained the word evil in their name. Smallpox was known as the foul evil, and epilepsy was known as the falling evil.
And just like in every other area of life from politics to economics, one very common thing we see in disease euphemism is to name things by assigning blame to foreigners. While syphilis was once known as cupid’s measles, it quickly turned into terms like Spanish pox, Spanish gout, the disease of Naples, Naples canker, and during the 18th century switched focus to France and became the French pox, the French aches, the French malady, and the French marbles. At that point, you were Frenchified if you came down with syphilis.
And the truth is we never really recovered from the intense fear of those times, when we didn’t know what to make of all of this suffering. It stayed with us, even after we began to really understand illness from a scientific perspective. Even today, the stigma is strong when it comes to mental illness for example. And the Lexis study tells us that what we’re still euphemistic about really is still rooted in all of that fear. Cancer, for example, is still fatal in many cases. Mental illness can be difficult to pin down and treat oftentimes, and it’s an invisible disease that you can’t see, and that’s scary.
We have language still for all these things related to disease that imply fear. E.g.: worried sick, losing one’s mind.
Decay, loss of control, and the fear of death. These are things that are still very taboo in polite society. Euphemistic language about them is a form of verbal control, a way to keep at bay otherwise infectious language. To not name what should not be named.
Sontag wrote that, “[a]ny disease that is treated as a mystery and acutely enough feared will be felt to be morally, if not literally, contagious.”
One book that heavily informed the Lexis research and a ton of other research is the 1991 work titled, Euphemism & Dysphemism: Language Used as Shield and Weapon. It was written by two linguistics professors from universities in Australia, Keith Allan and Kate Burridge. What they found through their research was that people primarily use euphemism as a means of saving face in front of others.
There are actually lots of studies about this particular element of human social maneuvering. And you’re going to recognize it right now as a I say it, because we’re talking about the fact that you speak and act differently depending on who you’re talking to. This is something that linguistics calls style shifting. It’s the version of you that you present based on who you’re interacting with.
The Lexis study authors point out three separate motivating factors for using disease euphemism in a social setting, two of which are relevant to our examination. The first is exactly that, it’s saving face. They write that it’s “a desire to be polite or impolite / humorous,” which they call a Face Flattering Act or a Face Threatening Act.
The other motivation that’s important here is that euphemism in this setting could create a sense of identity that both people belong to, to manifest an in-group and put yourselves in it and exclude others from it. Like if you’re both afflicted with the same condition.
So what we’re really talking about when we talk about euphemism is the idea of making yourself fit into your current space and current audience in an appropriate way. It is a sociological urge to belong, and to express that belonging.
But it doesn’t always come across in a positive light, as we’ve seen from some of the other research we’ve covered. Some people get very upset about things like battle euphemism in talking about cancer. I was one of them back in the day. I’m still one of them. I’m not really upset about it anymore. I’m not mad, I’m just disappointed.
If you ask me, if there’s anything resembling a battle about having cancer, then it’s Vonnegut’s representation of battle from Slaughterhouse Five. It’s like this absurdist, dispassionate, reporting on autonomous, systemic forces that are happening TO you, in which you yourself are so lost in the face of the enormity of life’s immense unfeeling cruelty that you simply become delusional. And then, the crushing trauma of living like this will have lasting, unavoidable effects downstream of your life that will touch every part of your existence.
One of the most notorious examples of disease euphemism comes from the Sick Kids Foundation. The Sick Kids Foundation is the fundraising arm of the Toronto Hospital for Sick Children. And in 2016, they launched an ad campaign that featured kids with cancer as boxers, knights, and one who had like a giant meaty guy inside him? I don’t know.
I’m actually really glad I somehow didn’t see it at the time, it’s f*cking awful. It won awards though. Like people went crazy about it.
And from looking into the research, it seems to me that social media just being another form of sociological identity expression, I think that people enthusiastically grasp onto and celebrate this kind of euphemism in order to signal that they’re involved somehow in the struggle. They care, or want to be perceived as if they do, and that’s the actual identity they’re putting out. You know, because if you do that publicly, then you don’t have to do anything for anyone that really matters.
I mean, that’s a cynical take, but maybe it does jive with the research about how we use euphemism to save face. And I understand that I’m the King of the island of misfit toys, I am an outlier in this and many things. I don’t like euphemism, and I don’t like what Trivers called a necessary deception. He said that euphemism is vital to the social fabric, and I’m the kind of person who writes essays that make people feel bad for trying to save face.
So what can we actually agree on that would help in this case? Instead of telling your neighbor going through chemo that they just need to fight harder, there are some real things you can do to make a difference, so we can do some f*cking good about the way we treat people with cancer in America.
First, you can just ask them how they’d like to be spoken to. For this, you’d have to shift your mentality from a reflexive, reptilian sort of brain stem mechanism of social masking, to like an actual intelligent and empathetic sense of discovery about someone. Signaling that you care about someone can be as easy as actually caring about them, and fighting the instinct to just fit in with something that you think is expected of you.
So that’s one, and it’s a big one.
And then there are the practical things, the super useful logistical things. You can drive someone to their appointments. You can sit with someone while they're in the chemo chair, getting their infusions. That’s one of the loneliest, saddest points of someone’s existence. You can bring them food. Because one thing that someone with cancer doesn’t have a lot of is energy. And cooking is one of the last things on their mind. Gifting someone prepared food when they’re in any kind of stressful situation is a trope for a reason. It’s helpful. It should be paired with genuine curiosity and real care about their situation, and not just used as a shielding tactic or some kind of avoidance or again a social cue that you care so that you don’t actually have to care.
Another thing you can do is just hang out. One of the biggest things that happened to me when I was going through treatment was that I became pretty agoraphobic. After my surgeries were done, I did a year of old school immunotherapy called interferon alpha 2b. And it just completely broke me. I spent a year on the couch in a snuggie. My family and my doctors threw me a snuggie intervention. There was nothing brave or battle-oriented about any of that, and if you ask me now I’ll tell you I was a failure, and there are a great many days where I can’t shake that feeling still.
Because a lot of the time I couldn’t bring myself to go outside, let alone just get off the couch. And then sometimes people came to see me, and I had to pretend to know how to do social stuff again. For me, it was painful, but I feel like if it had happened more often or if I had more practice at it, maybe I would have felt like a person again.
And then there were the people who sent me things. And that was really cool. I had a good friend whose wife worked at DC and they sent me a big stack of comics of all different kinds.
And I had my core group of friends that I’ve known forever, and they would come over and games when they could. And things would be like normal again. And that’s important, showing someone who’s going through something awful, that that isn’t all there is to life anymore. Because oftentimes, that’s what it feels like.
I wanted to talk about this idea of euphemistic labeling and also how writing this essay back then explains a lot of what I’m doing here on this channel. It illustrates a core concept of my work in general. Most of the books I’ve written have been about the same thing, whether fiction or nonfiction, and that’s the morbid curiosity of what happens when the extreme realities of life push someone all the way past the edge. I think about the fact that life itself can simply discard someone, and that’s just such a foreign idea to a lot of us. The level of devastation that some face on a daily basis would simply break the brains of a lot of everyday people. And I wanted to examine what it means to be the person who’s discarded, who’s broken, who’s left to try to wake up in the morning and just live another day.
And then I wanted to talk about how that person sees others, relating to them, as they’re moving through the world. And the niceties and politeness that comes out of fear of encountering that person. And I just feel like we need to be thinking about that more. Because illness and aging and decay is a part of life. A big part of life. And most of the time, we don’t engage with it until we get there ourselves. Because one of the biggest ironies of the human condition is our ability to intellectually engage with all kinds of varieties of experiences, but we have a complete inability to really understand them unless we personally experience those things and emotionally engage with them.
So if you know someone who’s going through something very difficult right now, whether it be illness or grief or something else, then focus on fighting through instinct and trying to engage and talk to them how they want to be talked to. And find some practical things that help to show them how you care, and don’t worry about what other people may see or think.
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