Heroes of the Fourth Turning opens on a concrete patio as Justin hovers over a dead deer at the edge of the Wyoming wilderness. Flash forward to night, and Emily walks outside to greet him, cane in hand. The play’s dialogue begins with Justin greeting his friend. “You okay?” Emily is quick to respond. “Yeah. Just in a lot of pain.”
Emily’s simple response is one that reverberates through the chronic illness community. When an able-bodied person goes for a check-up, they are often asked to rate their pain on a scale from one to ten. (The scale is usually accompanied by a crude diagram of various smiley faces smiling or crying.) This straightforward system is far too subjective when your symptoms, while varying in intensity, are throbbing and constant. Feeling “okay” may mean tremors every hour, dull pain behind the eyes, sharpness in your lower back. For Emily, it means chills. It means sensations in her “head, stomach,” she says. “Heart beating fast. Panicky. [In] my belly. And my skin. I don’t recognize myself.”
Justin, like many who interface with the disabled community, has a plethora of encouraging spins to offer Emily—“or maybe this is the first night of your healing!”—but it’s unclear whether Justin truly comprehends the complexity of Emily’s illness, which is suggested to be chronic Lyme disease. What can healing mean when rest does not solve your fatigue? When medications quiet your aches, but don’t satisfy them? When each episode pulls you further and further from knowing yourself?
These questions, however relevant, escape the public eye. Instead, well-intentioned but misguided beliefs float without substance in the general discourse about wellness. Many professionals insist that autoimmune diseases do have cures, and that they must be caused by stress—a little rest and mindfulness should solve all ills! But no cures currently exist for those struggling with chronic pain, and—according to the National Autoimmune Institute—“while chronic stress likely plays a role in triggering conditions, stress is not the singular cause. Given that doctors are dismissing symptoms and misdiagnosing diseases, when they pronounce it’s just stress, they are wrongly placing blame on the patient.” These suggestions, as well as blanket prescriptions, prove to be unproductive—no single treatment works for everyone. While holistic approaches such as exercising and meditating daily may help one disabled person, specific as—needed medications may work better for another.
On an interpersonal level, the dominant narrative surrounding chronic pain is one of saviorism and miracles. Later in the play, another friend, Kevin, presses Emily: “How are you feeling? Do you need anything?” Emily responds, “Stop. Don’t. I just—I really don’t—I don’t want to talk about my health.” Able-bodied people often feel entitled to an inside look of a person’s chronic pain, and when they do get that peek in, the insight can feed a savior impulse. Rather than trusting that a person with a disability can communicate their needs when necessary, they prematurely insist on being part of the solution. This, as well as force-fed mantras like keep your head up and it gets better, explicitly misunderstand the experience. In response, a chronically ill person often “masks,” or diminishes their level of pain to avoid unwanted attention. Emily is no different, waiting until she is alone with Justin in the final ten minutes of the play to physically collapse from exhaustion.
Looking at the bigger picture, masking is an unfortunate but essential tool to keep up one’s reputation in the professional world. For decades before March 2020, members of the disabled community were already campaigning for opt-in work-from-home environments. When a person’s symptoms can be erratic and intense, being able to call in from the bedside table is simple yet incomprehensibly important to one’s quality of life. Senior staff across the globe insisted for years that this was an unreasonable request until the COVID-19 pandemic forced able-bodied people to reckon with a new normal. Even still, companies are requiring employees to return to in-person work in 2022—including those who are most at risk of becoming sick. The messaging is clear: the majority of our country’s work-world will not accommodate nor acknowledge chronic illness.
In a truly vulnerable moment, Emily admits to Kevin, “There’s so much pain. And there’s so much time. So much time of me just sitting in my pain. And I get so angry.” It is possible, though, for pain and hope to exist in the same space. Medical institutions and autoimmunity advocates are slowly inching us toward an easier world. Apps like Zocdoc and Solv offer specialized and urgent care over the phone; databases of inclusive & informed medical care are growing more accessible to communities in need. Stories like Heroes of the Fourth Turning challenge the impulse to fetishize disability and pose essential questions to abled audiences: How do we expect chronically ill people to act? React? How do we stop pretending to know what we don’t know? More importantly, Heroes asks this of its disabled audience: How do we nurture ourselves when it doesn’t get better? How do we celebrate from within the labyrinth? How do we believe that our experience can be so much pain and so much more?