According to the CDC, nearly one in two adults lives with a chronic illness of some form or another, and 75% of healthcare costs are related to chronic illnesses. Of those living with chronic illness, 25% experience significant, limiting impairments as a result of their healthcare conditions. The incidence of chronic illness in the US is also increasing, with some authorities referring to it as a ‘crisis.’ In other words, you are surrounded by people with chronic conditions, even if you don’t have one, and the US is a nation of people dealing with a variety of conditions that may not always be readily apparent: Fibromyalgia. Asthma. Chronic fatigue. Heart conditions. Diabetes. HIV/AIDS.
Yet, there is a curious and troubling void in pop culture when it comes to the depiction of chronic illness. When impairments come up at all, they tend to be in the form of physical disabilities and classical (and usually troped) depictions of people with vision impairments, wheelchair users, D/deaf people, and other people with clear, evident disabilities. In terms of illness and disease, terminal conditions like cancer feature prominently, as do emergency medical situations, the bread and butter of medical dramas. But chronic illness — conditions that never go away, and just are, is nowhere to be seen.
Where is the chronically ill community in this pop culture landscape? Fully half of the people in the US look to pop culture and don’t see themselves in it, and in the rare instances that they do, it’s often in a very negative way, which hardly makes them feel like welcome members of society. For example, pop culture depictions of diabetes often focus on type 2, featuring fat people who shovel down food and eat themselves into chronic illness — ignoring the complex sociocultural factors involved in diabetes, let alone the fact that there are multiple types of the disease. Chronic fatigue and fibro, meanwhile, are still portrayed as ‘yuppie flu,’ a way to get out of real-world commitments and avoid responsibilities.
Finding incidences of chronic illness in pop culture is extremely difficult, and it’s even harder to find leads living with chronic illness — if they are, their illness is tragedised and turned into the most important part of their characters. The Lifetime movie with the AIDS patient, for example, who is struggling to manage her diagnosis, stay alive, and tie up her affairs before she dies gracefully and attractively in a hospital bed. More often, chronic illnesses are used as a plot advancement tool when they show up at all, a technique for dehumanising people and turning them into offscreen objects. Thus you have the parent who dies of an unexpected heart condition in YA, or the catalyst for a Jodie Picoult novel.
The presentation of chronic illness is variable, complex, and very, very diverse. Yet, we never see this in pop culture. For those with the few specific forms of chronic illness deemed acceptable by pop culture, it’s sometimes possible to catch glimpses and hints of their own lives in the film, television, books, and songs they consume. For others, they are entirely absent, or, worse yet, they show up in half-hearted and stereotyped, painful attempts that just make them feel worse about themselves and the conditions they live with, seeing firsthand that few people understand their lives and even fewer are interested in researching and reaching out to learn more about them. When creators dedicate meticulous research to making sure every aspect of something except the chronic illness is depicted with flawless accuracy, it shows.
People facing an absence of their presence in pop culture are often told that they should create their own culture, building up narratives to counter the dominant story, the one told by those in power. This is a false demand, though, because it assumes that the subject of the demand has the power to make it happen. People with chronic illness do in fact tell their own stories and create their own counter-narratives, but they are not a part of mainstream pop culture. It’s not because their depictions aren’t ‘good’ in the terms of creative works — they are, with brilliant execution, thoughtful creation and production, and all the points that pop culture is supposed to meet in order to satisfy critics. Their depictions are not welcome because they challenge the dominant narrative, and because their creators lack the ties and connections needed to get their work in front of the right people.
When a woman with, for example, fibromyalgia creates a comic about her experiences, people tell her it’s a niche audience. She does so with the understanding that she is unlikely to attract the attention of a literary agent, a major publisher, or a large independent distribution outlet that could help further her work and expose it to the public. Hyperbole and a Half, published by Touchstone Books (a Simon and Schuster imprint), was a striking and startling exception: A book about depression that made it on to mainstream shelves, and a narrative expressed by a woman who actually experiences depression.
It was a huge hit among people with depression, anxiety, and mental illness. It didn’t do as well among readers who don’t have this shared experience, because narratives about chronic illnesses of these nature weren’t viewed as for general audiences — instead, like stories about women, they are viewed as ‘niche,’ and those who aren’t living with that experience assume that books about it aren’t for them. Thus, a narrative created by a mentally ill woman to bring chronic illness into pop culture had its chance at breakout success, but ultimately didn’t reach a widespread general audience. It became yet another reminder that a huge barrier lies between chronic illness and pop culture, and that even when people ‘make their own,’ it’s still not enough.
While creations like Hyperbole and a Half are important and should be part of the canon, we need chronic illness in other forms of pop culture. We need it in works that aren’t explicitly about chronic illness. We need it integrated into the lives of characters in other creative works. We need chronically ill characters to be a part of the landscape — and for their illness to be an aspect of who they are, not their defining characteristic.
Image: release 229/365, Just Call Me Bethy, Flickr.