This article was originally published in The Grape, Oberlin's best and only alternative newspaper.
**As a disclaimer, I share this anecdote from my personal experience with chronic illness, and am in no way attempting to generalize what this experience is like for other people. Similarly, my interaction with the Office of Disabilities is not a judgment of the work they do or the support they offer for many students, merely my perception of a meeting and how it played into larger narratives regarding communication about chronic illness**
When I was 10, a doctor asked me if “I was enjoying my time at school.” Though I didn’t have the language for it then, I sensed the disbelief, the immediacy by which this doctor decided to pathologize me in lieu of treating me. It appeared easier to concoct a narrative that blamed my dissatisfaction with 5th grade as the source of my illness, rather than believe my own perception of my body. The language, saccharinely coded as compassion, said to me, “I don’t believe you. You’re not sick.”
Weeks later, when my blood work came back and the same doctor diagnosed me with a chronic autoimmune disorder, I remember feeling a twisted sort of triumph.
Gotcha! Who is laughing now, Doc? [Insert sheepish voice] Not me! Hah...hah.
This precarious moment, wherein my body proves itself as dysfunctional without necessitating my own futile explanation, is as upsetting as it is relieving, for briefly, my otherwise invisible condition—one incredibly hard to crystallize into lucid explanation—is verified by hard fact, errant numbers, and irrefutable malfunctions.
Yet if I go to such lengths to prove my illness to doctors, whose skepticism can be challenged by a litany of tests, my experience outside of their cold, strangely decorated offices (I have lots of pictures to prove this fact, and am happy to share), wherein I cannot provide results as evidence, an undeniable claim to my own experience, becomes complicated.
This leads me to a semi-recent interaction I had with the Office of Disabilities that I feel compelled to share before I leave Oberlin. After seeing many of my friends with chronic illness receive support from the Office of Disabilities, I ventured to see what help I could receive—namely, a meal plan exemption, as many of my symptoms are worsened by what I eat.
The nature of my meeting was, I believe, was meant to learn specifics about my health condition, meant to “help them help me,” rather than an interrogation into whether I was “really” sick. I want to emphasize that the Office of Disabilities were doing their job—this I understand. However, the apparent intention and the method by which this was enacted were at odds—while I was in no ways expecting a meeting where I was immediately given what I needed without any verification from doctors or more extended explanations, I did anticipate a space wherein, regardless of the services they could or could not actually provide me with, I would first and foremost be believed. I anticipated a space that was savvy to the difficulty of discussing illness, how vulnerable it is to discuss your body’s failings and how incredibly invalidating it is to be met with skepticism about those very failings being “real.”
My conversation was an odd, upsetting mirror of my experience in doctor’s offices when I was young, wherein I was met with skepticism before I even had a chance to define an illness that truly, evades definition. The “help us help you” model seemed to become an increasingly vague idea as I felt tested, interrogated, and met with resistance in my own accounts of my body and its failings. I felt this strange, meta-cyclical surreal landscape, wherein as I tried to communicate how hard it was to communicate about my illness, I was challenged on the words I used, met with incredulity on the basis of my inability to accurately define my illness.
I live in a liminal state, wherein my life revolves around words, and yet there is no definition for the defect of my body. On intake forms, I usually provide what that pesky doctor a decade ago, and many since, use as an umbrella term—Hashimoto’s Thyroiditis” (named for the doctor who discovered it). Writing “multiple vague symptoms” (which is a real term!) on forms doesn’t get me very far, for obvious reasons, and thus I hitch my complicated current state to a tangible and WebMD verified illness, opting to explain in person that there are various, potentially correlated but unverified, autoimmune complications. When I related in person that I had chronic autoimmune illnesses, the person I met with corrected me, saying, “isn’t this”—referring to Hashimotos’—“a thyroid disorder?” with a look of sheer disbelief. I elaborated on a definition I unfortunately know all too well—thyroid disorders are autoimmune disorders, seeing as any malfunction which causes the immune system to attack healthy as well as unhealthy cells can be defined as such. I was made to simultaneously defend my experience as I struggled to define it, trying to seem legitimate as I struggled to prove that what remains linguistically elusive has tangible, felt impacts on my daily life.
After I explained that for my personal situation the dining halls had been worsening my symptoms, I was told there were many healthy decisions I could make. I was told that “exemptions are not given based on convenience,” in response to my assertion that making what I ate was the best guarantee at my optimal functioning, which necessarily impacts how I thrive in both academic and personal spaces while at Oberlin. At the tail end of our conversation I provided the note from my doctor which helped me get permission to finish away in the Spring and be closer to adequate treatment. The note was immediately dismissed as being “too vague,” and I was given a concrete list of all the items my doctor would have to provide to prove I was sick, the first being, “a definition of the medical condition and how it impacts daily life.”
To receive written validation of your condition by doctors is necessary—this is a fact. However my doctors have difficulty defining what exactly is making me sick, and as I repeatedly tried to explain this, I was asked, “what sort of doctors are you going to?” which made me feel that, somehow, their inability to locate the problems in my body was my fault, my inability to correctly choose a doctor who could find a suitable name. When this person told me my existing medical note was too vague I felt further away from any semblance of support, or even acknowledgement that illnesses are complicated, specific to the individual, and not always easily defined or discussed. This person yearned for a name to my illness to help me, and while I appreciated this gesture, there was a lack of empathy for how hard hard it is to cope with something that is unnamable, not just for their sake—we all want a name for it, myself most of all. To name, in this instance, would be freeing. It would mean a lack of searching, feelings of free-floating amidst the world of everyone’s-opinions-about-your-mystery-ailments. It would mean giving strangers a concrete, google-able subject matter before they told you how their own research told them x, y, and z about your illness.
I heard, “this isn’t real enough,” “you’re not sick,” and “but you look so healthy,” in my head. I own that my own participation and projection of this conversation is directly informed by negative experiences I’ve had with people—doctors, friends, strangers—invalidating my illness based on my inability to define it, or the sheer fact that I “look healthy” and therefore, must be “okay.” While I was disappointed that this space, one I expected to be more forgiving and understanding about discussing illness, I am getting at a larger point here, one I think we can all learn from.
To have to prove you are not healthy is exhausting, often humiliating, and invalidating. To be able to choose whom I tell about my illness is a privilege, one I recognize and consider daily—to know that I “seem fine” is to fall into a visual standard of “health,” a standard that for many is harmful, biased, and wholly incorrect, using false representations of what “health” is supposed to look like (what the fuck does that even mean, right?) as a some sort of universal. When people respond to my disclosure of illness with, “but you seem so healthy!” or “oh I couldn’t even tell!” thinking they are somehow assuaging a deep concern I have of appearing “sick,” (and I respond with a vocally-fried rendering of “thank you?”) this invalidates what refuses to be named with what often remains unseen. We cannot know, ever, the experiences of other people with illness (and every experience) from our own observations, we can only know from engaging with them, from asking. However this instance can guide us all—there is a blurry line between questioning to learn more and interrogating, from asking from a place of curiosity and from disbelief, and how people who experience these interactions are sensitive to how others might perceive their presumed health or illness.