by V. Jo Hsu
At nineteen years old, you get sick. You spend weeks mostly in bed, sampling all the soups in Houston and finding that every one—chicken noodle, pho, tomato basil—makes you nauseous. It’s miserable, but sick is not yet something you are, just the land you frequent each year.
Because it takes too long for you to get better, you totter to your campus job. In the quiet chill of a Sunday morning, you digitize VHS tapes while sipping the Powerade your girlfriend brings midway through your shift.
You will do this over and over again in the coming years– choose work over the cry of your body. After you and the girlfriend break up, after your friends stop asking you to come out because your discomfort makes them uncomfortable, after you stop talking to your parents because they suspect you are faking your pain, because they are relieved when you and the girlfriend break up, because perhaps they and you have all been looking for an excuse throughout your queer life anyway.
You go to work because you need the money, because you have been taught that your value lies in your ability to outwork the people around you. If you are not the best, you will care the most. You will break yourself for what others will not– and maybe that will, finally, prove you belong.
You will wonder if this is what resigned you to a lifetime of illness—and how much of it is your fault. How, as a not-yet-out trans person of color you became so practiced in hating your body, in wishing it away, that you might have presumed it should hurt this bad. That you might have made it so.
In 2020, you will learn what you have as a post-viral complex chronic disease—myalgic encephalomyelitis, better known as ME or ME/CFS. You will learn that the intervening years that you spent trying to prove your toughness, your intelligence, your value in a world where trans and disabled and POC lives are presumed disposable—you may have irreversibly worsened your disease.
You will watch, from the bed where you spend hours of each day fighting to sit up, a viral pandemic sweep across the globe while the US President blames people who look like you for a nation’s indifference to public health.
By the time there is data on long COVID, it confirms what you already knew—what ME patient activists had been screaming from their sickbeds for years: that ME appears in roughly half of long COVID cases.
Other predictable injustices follow. Long neglected by medical research and even basic health care, transgender people report twice the rate of long COVID as our cisgender peers. It joins diabetes, cardiovascular disease, and “nearly all chronic conditions” for which trans people experience higher risks. Black and Latinx communities, overrepresented in the “essential jobs” that government officials put in harm’s way, struggle to access treatment for COVID-related complications.
When the ER nurse damages a nerve because—against your protestations—he insists he can find a vein through your tattoo; when you are forgotten in the patient exam room for hours, cold and alone; when the doctor dismisses your testimony and asks, already assuming, “do you know what a peer reviewed study is?”– you will wonder if it is because they do not recognize what pain looks like on your face.
Our institutions—including medicine, including universities, including academic disciplines—require us to translate suffering into languages they’re willing to hear. They demand relatability without recognizing that pain is always lived in relation.
Of the estimated 16 million US Americans with long COVID, 1.6 million cannot work and more have to take reduced hours—hours that also subtract from their time with family and friends, and the hobbies they once loved. Hours that must be filled by people with more capacity for labor, who in the machine of capitalism are not regarded as human but as more resources to expend.
The pain of the past three years—the mass-disabling spread of COVID and long-COVID, the anti-Black and anti-Asian violence, the targeted abuse of trans people, the eruptions of a planet in crisis—belongs to all of us. We are all pushing on the wound whether to staunch the bleeding or hasten its flow.
Here’s a lesson from chronic pain: To wake every day to the unsteadiness of your bodymind. To know that every effort, every small joy, is bartered against your faltering health. To continue connecting and collaborating and urging others toward an interdependent future is to hope against the weeping of your body that healing is possible—if not tomorrow then eventually, if not for you, then for your communities, if not yet in a way you can imagine, then in a future that you will build with others.