CONTENT NOTE: blood work, medical trauma, emetophobia, medical ableism
I sat on the hard metal gurney, watching my legs shake underneath the torn forest green scrubs. I tried to count my breaths, my ears throbbing from the cacophony of emergency room beeps, as the nurse stuck me for the fourth and final blood draw attempt. After we finished, I was left alone again, resting next to a wheezing man in the hallway not wearing a mask. I focused my gaze on my socks, a purple pair with cats smiling back at me, mentally accessioning another object and its associated memory into my collection.
I’d never needed an ultrasound-guided blood draw, but I have notoriously deep and rolling veins; my grandmother was the same. I know it’s strange to experience chronic illness through the things taken, given, and lost in the process but, as a museum worker, I am naturally drawn to the tangibles of my “invisible illness.” While these objects shouldn’t feel necessary to affirm my experience, the blue plastic vomit bags, the slimy strawberry hospital gelatin dessert, and the EKG electrodes that stick to my favorite shirts are the few ways that I can record my own history and convince doctors that my symptoms are real.
Over the last two years, there have been many physical items that have come in and out of my life as evidence of chronic illness. Some were unexpected additions, like intramuscular syringes for B-12 injections and pill cutters. Some were things that I lost: blood and tissue samples that I learned later had been misplaced or misprocessed. The objects that I add to this collection are few and far in between and often short lived. None is more meaningful, however, than my assortment of colorful, bizarre socks that serve as a symbolic exercise of my bodily autonomy.
I recognize that socks are a strange icon of chronic illness; the only ones I have received from medical professionals are mustard tube socks with silicone grippies on the soles. But quickly into my journey, I learned that socks are the one article of clothing I didn’t have to remove in medical settings. As I am autistic, they were the one piece of my medical outfit that I could regulate, as clothing texture, material, seams, and tags are intimately tied to my experience of medical settings. In a world of scratchy exam robes and yellow booties that aggravate eczema and sensory overload, my socks symbolized self-advocacy and control.
I didn’t need anyone’s consent but my own to put on a pair of sparkly, embroidered socks every morning, whereas I had to ask permission for foods, nail polish, and hair style prior to surgery and outpatient procedures.
They stood as a reminder that the decision maker in the room was the one wearing the colorful socks, rather than the person wearing the white coat. This was especially important when I encountered doctors who downplayed my symptoms or attributed them to valid, but irrelevant causes. “Racing heart, numbness of hands and numbness around the mouth could also be due to anxiety. Make sure you are well-hydrated, avoid caffeine and alcohol, and try to keep stress levels low.” These are all critical pieces of my care plan, but they were already in my chart as a patient with chronic gastritis.
PCOS is a valid condition that I do have, but my nausea, numbness, chest pain, racing heart, and fatigue could not all be tied back to “women’s problems,” an outdated, trans-exclusive term. Medical gaslighting is a real phenomenon. For someone with undiagnosed chronic illness, where I live in a diagnostic liminal space, my socks served as time capsules for each doctor’s appointment, ER visit, and night spent laying on the bathroom floor.
Five hospitals, three years, and 25 doctors. Eighteen doctor’s appointments and over 50 blood tests in the last three months alone, and that’s on top of working full-time and attending graduate school. Chronic illness is not a competition, but I use these metrics to highlight the medical ableism I encountered, where my symptoms and I were reduced to numbers in a patient portal and little exclamation points for out-of-range results. Each time a doctor would hand me a normal test panel and referral note, still warm from the printer, I would take a deep breath and look down at my socks, remembering the symptoms I had the last time I wore them.
I saw sleep specialists, neurologists, psychiatrists, gynecologists, gastroenterologists, rheumatologists, and endocrinologists; the last two specialists sent me back and forth four times, pointing fingers at one another. Every appointment yielded new speculation. Fibromyalgia or chronic fatigue? Addison’s or Cushing’s? Sjogren’s or gastritis? Doctors repeatedly failed to check my four-page medical history and ordered the same test three times; the lab lost my 24-hour urine analysis twice and my salivary cortisol test once.
There were points in which I wanted to believe that these symptoms were made up, or they were less severe than I was experiencing. It would have been much easier to buy into the self-gaslighting dialogue these doctors had cultivated within me, but my socks kept pushing back on this idea, and reaffirmed the realness of my symptoms. Borrowing a term from the field in which I work, I describe these socks as part of my own “material culture” of chronic illness. Material cultures are the physical objects through which we live our lives, often used to document individuals and communities who themselves do not leave a written record.
As I am not writing the prescriptions, visit summaries, or test orders, this term resonates with me personally. There has been extensive research focused on the lived experiences of people with chronic illness, a vital area to improve the medical field and support for individuals with chronic illness, but I argue that an emphasis on the physical, both within the medical and disability communities, also merits study. These objects—lancets, alcohol wipes, and suction tubes—are the physical embodiment of my medical experience, and are therefore what I must use to deconstruct my medical trauma and internalized ableism.
One part of this deconstruction is recognizing how problematic it is to consider these objects as “validators” of illness. When symptoms remained “invisible,” I felt that these objects were the only evidence I had of my suffering. Up until this past year, I believed that my chronic illness was valid because of the medical objects and medical attention that I received. This was a defense mechanism rooted in a structurally ableist society, and one that sought to devalue my experience as a disabled person on the basis that medical devices are necessary to “prove” suffering and the need for medical help and treatment.
Feeding tubes, adhesive patches, and mobility devices are not what make someone chronically ill or disabled, just as a diagnosis is not what validates a person’s symptoms. My own journey to understanding and accepting this is what I hope will be an invitation to start a dialogue in the disability community and beyond about the complicated meaning of our own material cultures.
At the end of that fateful ER visit, I left those warm purple cat socks crumpled up in a hospital trash bin. Collection does not mean permanent ownership, but rather is the process by which we make meaning with what we choose to keep and let go. For me, creating my collection of medical objects, including my socks, is how I unpack my own medical trauma. This is because within chronic illness material culture, the objects that surround me, affect me and change me, often exist for less time than my symptoms. The chronic illness community is one whose own material culture is ephemeral, so seeing these objects as waypoints on a long-term medical journey highlights the American healthcare system’s own struggle to treat chronic disease.
Of all these objects in my collections, however, these socks reminded me that my chronic illness is real and this punctured and pinched, scoped and scalpeled body belongs to a human being, is my human being. My socks reconnected me to a body I believed had betrayed me, a body I believed was not mine to describe its experiences, and recorded my history of medical trauma. As someone who naturally collects things, I now see my socks and the material culture that surrounds my medical journey as critical to documenting the healthcare system within which I struggle and which I set out to change.
Emma Cieslik (she/her) is a museum professional and writer based in Washington, D.C. Emma is passionate about researching the material cultures of marginalized communities, including her own, as a queer, disabled, and autistic woman. You can find and follow her research and writing on Twitter.