The Invisible Labor of Being Ill

By: Amber Butts

Black disabled and chronically ill people are often forced to become the archive of our own bodies. We spend days, months, sometimes years trying to establish and translate what our bodies are telling us. We assemble a history that exists nowhere else, carrying the context our healing depends on, and are treated as amateurs anyway.

In August of 2024, I was rushed to the ER with unbearable abdominal pain. I had been diagnosed with complex IBS more than twenty years earlier, so gastrointestinal pain and I have an intimate relationship. ER visits are not unusual for me. Living with IBS means flare-ups, abdominal pain, and sudden shifts in bowel function that can leave me with limited mobility for days or weeks at a time.

My CT scan showed a severely inflamed appendix. The attending physician in the emergency department outlined my options, including an appendectomy the next morning or waiting several weeks. I chose the appendectomy the next morning. My appendix ruptured in the operating room. Later, while recovering, I read the attending physician’s notes. She described me as “adamant.”

When my phone rang two weeks later, it was the surgeon who had performed my appendectomy. She told me they had found a tumor, but she never said the word cancer. Eventually I asked whether it was malignant or benign and how large it was. Before she answered, she put me on hold. The type of cancer was rare, she explained, and because of where it had been found, she wanted to make sure she described it correctly.

Right before the call ended, my partner came into the room. I hung up, looked at him, and told him what the surgeon had said. He rocked me back and forth on the edge of our bed.

At first, there was hope it had been contained within the appendix, but further testing changed that. The cancer had spread into the surrounding appendiceal fat and through the lymph nodes. The next step was a hemicolectomy where half of my colon would be removed.

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After the hemicolectomy, I spent somewhere between twenty-four and forty-eight hours in a hospital room that had to be close to ninety degrees. At first I thought the heat was coming from me. I wondered if I had a fever. Whenever the nurses came in, they assumed I wanted the room that warm. Later someone realized the air conditioning in it had broken. I had spent hours trying to decide whether the heat was coming from my body or from the room around me.

Hours passed before anyone could move me. The heat never let up, and I drifted in and out of consciousness. Eventually I pushed myself out of the room and dragged a lounge chair into the hallway. I should not have been walking at all, let alone moving furniture. I was exhausted, but at least I could breathe.

Recovery ended and the appointments began all over again.

Follow-ups, referrals, scans. Each came with paperwork, instructions, and new expectations. Dates, dosages, side effects, and questions surfaced hours after speaking with physicians. None of this is called treatment, but it is part of the work of being sick.

Much of what patients are expected to do in medical settings is administrative labor. We become the healthcare system’s memory, tracking symptoms, managing records, coordinating referrals, and following up on tests while someone else retains the authority to decide what our bodies mean. We learn to listen to our bodies only to be told that someone else knows them better than we do.

I began downloading records, comparing pathology reports, checking medication lists, requesting imaging, and sending messages through patient portals. I carried the same medical history from one appointment to the next because no one else had all of it in one place.

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I’d be lying if I didn’t say there is a particular exhaustion that comes from being expected to stay coherent while unwell. The exhaustion is not only from illness itself, but from navigating systems that ask for our trust while requiring us to continually justify our need for care.

Almost two years after my appendectomy, I am still learning what the medical industrial complex has taught me about care and its absence. It shaped not only my sense of self and what I believed I deserved, but how I ask for support and whether I see care as something I have to secure alone.

Growing up, we did not always have dental insurance. When I was nine, a dentist told me, “At the rate you’re going, you’ll lose all your teeth by 30.” I did not even have a cavity until I was 17. He saw my teeth. He did not see the circumstances that shaped them.

As a Black disabled parent raising a disabled child with complex medical needs, I was managing my own cancer care while making decisions about my child’s care. My appointments existed alongside his medications, his specialists, and the constant calculations that come with keeping him safe.

Sometimes the appointment meant to provide care requires another kind of care to be rearranged, delayed, or carried by someone else. It means managing schedules, making calls, adjusting medications, and deciding what can wait when his needs do not pause.

I leave those appointments still responsible for carrying the context our care depends on. But I come from people who have always carried knowledge for one another.

My nana was a nurse. She kept a 1,000-page medical book under her bed and answered calls from people across the country, sometimes late into the night, asking about symptoms and seeking her expertise. She always picked up, even when those calls came with phone bills she could not afford. 

They knew where to go. We know where to go. Toward each other.

Black disability justice offers a different vision of care. It remembers with us, holds complexity with us, and refuses to mistake a medical record for a person’s life story.

Amber Butts is a Black mama, abolitionist, and advocate for collective freedom and self-determination. Rooted in Oakland, she moves through worlds of play and repair, treating tenderness, nuance, and joy as abolitionist strategies of survival and transformation. Her role as an organizer is guided by expansive, nuanced visions of Blackness that refuse constriction and one-dimensionality. Her work—through cultural strategy, storytelling, and grief practice—carries forward traditions of mutual aid, imagination, and struggle across generations. Amber’s favorite freedom practice is observing how non-human beings organize to confront power and protect one another, lessons that shape her abolitionist commitments and her vision for interdependent futures.