This is an article from the fall 2018 issue of LSA Magazine. Read more stories from the magazine.
To diagnose an illness, you have to compare a patient’s symptoms to the symptoms that characterize different kinds of disease. A headache could mean stress, the flu, or a sinus infection. A swollen finger could be arthritis or an injury. Of course, an accurate diagnosis relies on other factors, too: a patient’s medical history, their experience, and the ways they behave.
But once a patient receives a diagnosis, we also expect them to have certain behaviors that conform to what we think is the “right” way to manage their disease. As an example Beza Merid, a Collegiate Fellow in the Department of Communication Studies, offers people who have been diagnosed with cancer.
“If you have cancer, you are often expected to act cheerfully, think positively, and invest your energy in being a good, responsible patient,” he says.
“But what if I am a cancer patient who doesn’t want to be optimistic or cheerful?” he continues. “Does that make me a bad patient? Does it make me a bad person?”
These questions are at the core of Merid’s research, which looks at the ways that patients, caregivers, health institutions, and the media define what it means to be sick — and the ways this definition has changed over time. Until the early twentieth century, Merid says, health was characterized as something you had. Today, he says, health has become something you do.
Know Your Numbers
“To be a responsible patient, you’re supposed to know and understand and to act on your risk of disease,” Merid explains. “This means you wear a fitbit, you go on diets, you exercise, and you know your cholesterol and your blood pressure.”
But it’s not enough to manage to do all of these things, Merid says. You have to know and monitor your personal risks and also be prepared to act on them. “We’re being asked to be responsible patients at earlier and earlier stages,” he says. “And there’s this kind of moral imperative that is attached to that.”
This moral imperative is one component of our evolving notion of health that Merid sees as largely fueled by media. Media has clearly shaped and influenced pharmaceutical ads, and when celebrity voices end up on public service announcements — Anthony Anderson, LeAnn Rimes, Felicity Huffman, and Martin Short are all currently participating in such campaigns — it’s no surprise that the star power helps the messages to reach even more people.
It may come as something of a surprise, however, to learn that health organizations also partner with the entertainment industry to deliver health information through storylines and characters, such as those in Homeland, Grey’s Anatomy, and Breaking Bad. “Research shows people rely on entertainment media for health information,” Merid says, “and so there’s an effort to ensure they get accurate information from these media.”
But he says it’s important to know that people are also told what appropriate emotional responses to managing health conditions look like. “These messages pervade our everyday lives,” Merid says, “and so it’s better, I argue, to be aware and critical of how we consume them.”
Do As I Say and Say As I Do
Health institutions have long used the media to encourage people to think and feel particular ways about their risk of disease. Sometimes they want people to act; other times they want to prevent them from being so fearful that they don’t act at all. If people imitate the health institutions’ emotional models, the thinking goes, then people are more likely to follow their advice, too.
While good patients are busy consuming health information, many are also producing it in cancer blogs or videos that divulge intimate, detailed accounts of what it’s like to live with particular diseases.
“They often blur the line between what was once considered private and public,” Merid says. “In some cases, people really want to have control. Other times, when you see videos on YouTube, people are recording whatever is happening with abandon.” Online campaigns such as #hospitalglam put patients — and not clinicians — at the center of the information exchanged. Merid thinks these unrefined records of personal experience might hold a key piece to reforming health care.
In the classroom, Merid wants his students to learn to imagine what it’s like to embody an ill person’s experience. What is it like to live with an invisible illness that prevents others from recognizing your role as a patient? What is it like to live with a chronic disease, or to face crushing medical debt?
“I think it’s important to understand that, aside from the partisan politics that surround health care reform or health activism, there are personal, urgent, and immediate stakes,” Merid says. “I want my students to think about what it’s like on a day-to-day level to live with and negotiate this kind of illness experience. It’s all about getting students to recognize that this information is out there and is part of the media we consume. These are real lived experiences that shape people’s lives.”
In the end, he says, it’s important to realize we actively participate in the health media landscape.
“It is made up by us and by health institutions,” Merid says. “It is co-constituted by us, which means it can be changed by us as well.”