Struggling to be Seen

Struggling to be Seen

The Clinical Invisibility of Contested Illnesses

written by Juliana Fox

Xxam Room 1. A gaudy green table sits in the middle of the room. My palms sweat against its slick material as I lift myself up, the movement accentuated by the harsh crackle of the waxy paper as I sit down. My feet dangle aimlessly off the side. I feel small, like a child.

“The doctor will be right in to see you, alright?” More of a statement than a question, punctuated by the soft click of the latch as the nurse exits.

I nod my consent at the closed door, eyes remaining glued to the checkered floor. Anxiety pulses through me as the seconds tick by, and goosebumps raise on my sticky, flushed skin.

Minutes later another click, followed by a rush of noise from the hallway. My eyes snap up; a young woman stands in the doorway—her pristine white lab coat matches a wide smile as she extends her hand. “You’re...” she pauses, eyes flitting down to her chart. “You’re Juliana, yes?”

I went to the doctor that day after weeks of persistent chest pain—after weeks of weighing whether a potential diagnosis was worth yet another experience of having my symptoms completely dismissed. I knew what my doctor would tell me; random bouts of body pain and fatigue are symptoms to be expected from my fibromyalgia diagnosis. When I asked for tests, she informed me that regretfully there were no tests available to confirm symptoms of fibromyalgia. She explained to me that tests for heart conditions would be excessive as fibromyalgia patients are often just “really stressed”, then she walked out the door to her next patient.

photo by Jasmine Jung

I, like many others, suffer from what is called a contested illness. According to Conrad and Barker’s “The Social Construction of Illness”, a contested illness is one “where sufferers claim to have a specific disease that many physicians do not recognize or acknowledge as distinctly medical”, like fibromyalgia, chronic fatigue syndrome, and chronic Lyme disease. Most contested illnesses are tied together by two common threads: first, there is little to no understanding of their biological basis; second, both medical professionals and the patients themselves often question the authenticity of the presented symptoms.

But where does the concept of a contested illness come from? At the heart of the issue lies the emerging distinctions between symptom-based diagnoses and testbased diagnoses. In “When Do Symptoms Become a Disease?,” Robert Aronowitz examines how recent advancements in biology and medicine have laid the groundwork for a distinctive shift in the perception and treatment of diseases. While physicians previously focused on symptom-based diagnosis—relying mainly upon self-reported symptoms from patients in order to achieve a diagnosis—they have recently instead favored test-based diagnoses, in which identification of the biological underpinnings of a set of symptoms leads to a diagnosis.

Undoubtedly, there are innumerable benefits to this test-based diagnosis process; however, an emphasis on this single mode of diagnosis raises a new problem: what happens when the biological basis of a disease is not yet understood, such that there are no tests available that can confirm a diagnosis? Aronowitz describes how the invalidation of symptom-based diagnosis has left a subset of poorly-understood diseases neglected. The resulting issue is a systematic separation of patient and physician experience within the clinical setting, with patient experiences being undervalued in favor of medical testing. Many who suffer from fibromyalgia and other contested illnesses are unable to achieve the validation, support, and resources that a diagnosis should provide, leading to intrusive feelings of invalidation.

I can still distinctly recall the way that this pervasive doubt colored my initial diagnosis; as doctors questioned me about everything from my symptoms to my diet, I remember the fear that seeped into my thoughts. With each doctor that visited, I questioned myself more. Many nights, even now, I lay in bed, head swimming as my body floods with searing pain from injuries that have long since healed; what keeps me awake in many cases is not just the discomfort but the paralyzing doubt in my own reality and senses.

In spite of the struggles faced by many individuals with contested illnesses, there is still hope on the horizon. As the downfalls of over-emphasizing test-based diagnoses have become more salient within our culture, increasing advocacy has subsequently produced improved awareness. On the medical side, continual advancements in science and the biological basis of disease inch closer towards shedding light on the underpinnings of these conditions. While there is, undoubtedly, still a long way to go, these developments on both the sociological and biological levels give me hope that we are approaching a time when “contested illness” is nothing more than an obsolete term of the past.