As a linguist, I want to find the words to measure chronic illness

Heather Hogan / The Sick Times Let me paint a scene that is all too familiar: I’m not feeling well (again), I go to the doctor (again), they take some blood (again; I turn my head away) and poke at me in whatever way my insurance company deems appropriate. The result is a long sheet of seemingly arbitrary numbers that indicate something about my metabolic processes and the resulting sensations, and I leave without much information aside from some variation of: “These tests tell me that your body seems to be functioning the way everyone else’s is. So we leave you linguistically empty-handed, without a diagnosis or words for these sensations. In conclusion, you’re fine.” Then why do I feel like I’m full of noodles and static electricity? Where’s the electric noodle test, Doc? If you also have a complex chronic illness, you’re probably familiar with this experience. These conditions and diseases create a massive linguistic gap that can be difficult for patients to bridge — and even more difficult for medical providers because they don’t experience what we do every day in our bodies. So what words can I, a linguist and a patient with sensations perceivable only to me, use to fully capture these mast cell activation syndrome (MCAS) and postural orthostatic tachycardia syndrome (POTS) sensations to my providers? And, more generally, how can we measure our unsettling internal realities if we can’t even name them? How do you effectively measure something like pain, cognitive dysfunction, or feelings of noodliness when so much of medical measurement is reliant on readily observable phenomena — or, stuff that usually has really precise words? In these moments when I am overwhelmed by this gap, I remind myself that immaterial to others doesn’t mean unreal — and that, after all, people have words to explain immaterial concepts like gods and quantum physics. The words for these unseeable sensations in my body must exist somewhere, and it’s up to patients and healthcare providers to work together to either find or invent them. My body has always been quick to reject the world. With a family full of medical anomalies, I knew I would one day get my own diagnoses. Growing up, I had seen women in my family suffer from things that were readily dismissed by both clinicians and the general public — namely, chronic pain, fibromyalgia, and migraines. There was never a doubt in my mind that these illnesses caused suffering in the bodies of the people I cared about, even if I couldn’t see or feel the sensations that characterize them. Eventually, many of these sensations would manifest in my own body. They are bizarre, uncomfortable, and painful sensations that I frequently struggle to find the words for. I suspected I had MCAS in spring 2019. I began to react strangely to food I’d enjoyed my entire life, had sudden bouts of unexplainable hives, and was often dizzy. To advocate for myself with doctors, I consulted the much-hated “Dr. Google” (that’s Dr. Google Scholar to you!). I read any peer-reviewed paper with the right keywords, Wikipedia’d the hell out of any biology I didn’t know, frequented message board after message board, and eventually cobbled together a list of the appropriate tests for my symptoms. I knew something was wrong with me, and I was determined to articulate it into numerical existence. I eventually did get my diagnosis in March 2022 — which is, comparatively speaking, a very short timeline for receiving a diagnosis of MCAS. I was diagnosed with POTS a few months later after going through a similar gauntlet. I knew something was wrong with me, and I was determined to articulate it into numerical existence. Over the course of my diagnoses and ongoing treatment, I’ve internalized a few things about language, illness, and measurement. The first is that, even though it gets easier over time, how I describe the sensations in my body will always be inadequate. That’s not a reflection of me — language can express only so much, and I can’t AirDrop my sensations to another human to make them feel exactly what I’m feeling. Second, my doctors and I can’t just take a yardstick or thermometer to sensations like pain or discomfort to measure them. Before measuring these sensations in a quantitative, or numerical, way (e.g., a person may be 62 inches tall), we first need a qualitative, or descriptive (e.g. an apple may be green) understanding of what is going on. To get the fullest picture of illness, we need to account for both the quantitative and qualitative — and the qualitative work will always inform the quantitative work. Lastly, we can’t outright measure things we can’t directly perceive. Instead, to measure something like Long COVID (i.e., an “invisible” illness that we can’t observe just by looking at someone), we have to measure things like Long COVID biomarkers, which are “measurable traits in the body” (i.e, a directly observable thing, like blood test results). This gives us information about those traits as they relate to the condition, but does not measure the actual, unobservable sensations of that condition. While measuring traits like biomarkers provides doctors and patients with quantitative information, it still does not fully account for this huge linguistic gap. In an ideal world, scientists find a single indicator of a given condition or disease. But finding biomarkers is a long, complicated process — and even if we get that perfect, singular biomarker to diagnose Long COVID or MCAS, it fundamentally still would not capture the experience of the illness. The end result is always going to be that, no matter how much testing I undergo, my test results won’t ever wholly reflect the internal, imperceptible-to-others, alienating realities that I experience. But finding biomarkers is a long, complicated process — and even if we get that perfect, singular biomarker to diagnose Long COVID or MCAS, it fundamentally still would not capture the experience of the illness. To be clear, there is obvious merit in the quantitative, empirical side of medicine. I subjected myself to test after test because I believe there’s merit in it! But it’s frequently insufficient when dealing with chronic illnesses and all their accompanying internal sensations. Researchers and clinicians have developed ways to measure some difficult-to-capture internal sensations, but many of these tools are either incomplete or haven’t been fully validated to ensure that they’re actually useful for patients and doctors alike. A great example is pain scales. Pain, a universal-but-internal sensation, is still difficult for clinicians to capture in an objective manner, even though they have developed a myriad of scales over the last hundred years. How useful are numerical scales when they’re used on a person with chronic, all-over pain versus a person with acute, localized pain? How useful is a pain scale that evaluates a patient’s face when some people are accustomed to pain every day, or when they have to mask the pain during assessments lest they be labeled “difficult” or “drug-seeking”? The process of measuring myalgic encephalomyelitis (ME) faces similar issues. The Bell CFIDS scale, a measurement tool developed in the late 1980s, is used by some people with ME and doctors to assess how the disease impacts a person’s daily life and ability to work. But the scale’s descriptions lack needed precision, referring generally to people’s “activity levels.” Last spring, ME advocate Whitney Dafoe published an article with medical researchers proposing a new scale that could better account for many of the ways severe ME impacts a person’s life, and proposed multiple categories for “Extremely Severe.” This new granularity, along with accompanying qualitative information for each category, provides a much-needed update that better reflects the internal realities of severe ME. Bell CFIDS scale New scale proposed by Whitney Dafoe and colleagues The out-of-date and underspecified measurement tools that we see all throughout medicine, like the CFIDS scale and pain scales, leave patients without the help or answers we deserve to live our lives comfortably. Again and again, I find that the most upsetting parts of my MCAS experience are not reflected in my patient notes or lab results. Where in my examination report does it talk about turning down a home-cooked meal from someone I love? Letting my old clothes hang in my closet because they’re not comfortable for me anymore, but I can’t shake the hope that they will be in the future? The random, sudden onset of tremors and dizziness during a meeting and trying to figure out how to best excuse myself while on the verge of passing out? “Friends” who would sooner let our relationship wane than make an effort to meet me where I’m at? These are the moments that flash through my mind when discussing test results, seated in a sterile blue-gray room, holding back my tears until I can cry on the 6 train and intellectualize everything like a real adult. All these things are a part of my illness, too. There is a lot of ambient terror and grief in my life. That’s a normal emotional response to living in an unruly body in a world full of systems and people who continually turn away from things that are uncapturable, unquantifiable, and uncomfortable. Chronically ill people do not have the luxury to turn away from our internal, unnameable sensations — we are always at odds with that weighty linguistic gap — and sometimes it feels worse than illness itself. I do so much work to name this terror and to face this grief head-on. I wake up every day, take my medication, and live my life to the best of my ability despite the ever-present fear that my body could just give up on me without warning. I do this because I deserve to live the life I’ve constructed for myself, as we all do, but also in large part because I am optimistic about the future of more humanistic medicine that can acknowledge this gap and name these unnameable things with us. I want practitioners and researchers to help us name things so that they can measure them, and so that those measurements can be accurate reflections of our internal realities. In examination rooms and labs, please sit with us in our discomfort so we can shrink these linguistic gaps. I want practitioners and researchers to help us name things so that they can measure them, and so that those measurements can be accurate reflections of our internal realities. M Corvi (they/them) is a linguist and researcher from New York City. Find them on Twitter/X @emilycorvi. Editor’s note: This essay is not available for republication, at the writer’s request. The Sick Times is dedicated to independent Long COVID journalism, without denial, minimizing, or gaslighting. By donating to this non-profit publication, you: Help us produce more unique news and commentary stories like this one. Support free news access for everyone impacted by Long COVID, regardless of their financial situation. 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