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Reimagining Diagnosis

Invisible Illness and the Clinical Gaze

The distinction between organic and functional disease that emerged through the anatomo-pathological gaze in the late eighteenth and early nineteenth centuries. Whereas the label of functional disease is now understood to indicate that an illness is psychogenic, its initial meaning was more nuanced. Influenced by natural scientists who described and mapped elements of the external world in an effort to discover the relationships between them and the rules that governed them, early pathologists described and mapped elements of the human body. Through their work, sickness came to be understood as something that has a specific, concrete, observable location in the body.

Upon death, sick bodies were opened up and examined for organic disease, that is, structural abnormalities that could offer an explanation for the symptoms they had manifested in life. In the living sick, symptoms became signifiers that referred to organic disease. Groups of symptoms that could not be linked to an organic referent came to be categorized as functional diseases. Through the logic of the clinic, the pursuit of the physician shifted, from healing the sick-person to removing the pathology from a body.

The nervous system has long posed a particular challenge to this static gaze. Its functionality is determined not only, nor even primarily by its structure, but also by dynamic interactions between volatile components that are too small to view under a light microscope. Moreover, its roles in perception and cogitation complicate the Cartesian binaries of body and mind, subject and object that underpin medicine's cosmological shift from treating people to examining and repairing bodies. Thus, there was (and remains) a large overlap between the categories of nervous disorder and functional disease.

In the mid-nineteenth century, the dominant paradigm for diagnosing and treating functional nervous disorders was reflex theory, which held that each organ in the body could exert influence on the others, through a network of nerves that linked them all together. During the early decades of the 20th century, a new paradigm gained popularity.

The psychosomatic model of functional disease is derived from the psychological paradigm, which emphasizes the role of mental processes in producing a person's perceptions and behaviours. It suggests that sufferers of functional illnesses manifest their physical symptoms as a way of externalizing emotional conflict that they are unable or unwilling to process consciously. In the late 20th century, biopsychosocial models incorporated lifestyle and behavioral factors into theories of invisible illness that remain predominant today.

The Clinical Gaze is Inefficient

A broader clinical gaze has evolved from the logic of the early anatomo-pathological gaze. Clinical diagnosis remains dependent on seeing. Clinicians image organs and tissues, look at blood smears through microscopes and pass them under sensors, sequence genetic code, take throat cultures, and compare new cases to the ones they have seen before. Clinicians also acknowledge, albeit indirectly, the inefficiency of this approach: when discussing poorly understood illnesses such as myalgic encephalomyelitis and long Covid, they point to other conditions such as multiple sclerosis and lupus which, until relatively recently were not legible to the clinical gaze and were therefore poorly understood. Their solution to the ongoing problem of clinically invisible illnesses is to advocate for more research, to make these illnesses legible by finding the pathological signs by which clinicians can recognize them. They argue that we solved earlier medical mysteries by "following the science" and suggest that our response to contemporary medical mysteries is anomalous. But these arguments oversimplify the histories to which they refer.

They neglect the fact that, until the pathological signs of diseases like multiple sclerosis were identified, people did indeed receive functional and psychosomatic diagnoses, like neurasthenia and conversion disorder. They neglect that people with these conditions continued to receive psychosomatic diagnoses well after their pathological signs were identified and diagnostic criteria were standardized. They neglect that presence of a pathological sign does not guarantee clinical recognition-that still depends on whether a clinician orders the right test, how a technician performs and interprets it, and what conclusions the clinician draws from the technician's interpretation. It also depends on luck, because false negatives can happen.

Finally, they neglect that healthcare is a capitalist enterprise, whether it operates in a free market system or is administered by a capitalist state, and that the process of getting from pathophysiological hypothesis to clinical costs an immense amount of time and money. This has a couple of major consequences. First, pathophysiological research tends to be conservative; the hypotheses that get funded and therefore explored are those that build upon established knowledge. This leaves little room for radical innovation of models and methods. Second, it disincentivizes research into the pathophysiologies of hard-to-visualize illnesses. When an illness requires entirely new methods and new technologies in order to find its pathological signs, it's much more cost-effective just to call it biopsychosocial and then quietly bracket the "bio" part and suggest patients focus on diet and lifestyle and changing their thought patterns.

Except that in the long-term it isn't. Setting aside the injustice and harm done by primarily psychosocial responses to somatic illnesses, it's an economically disastrous approach in the long-term. Consider, for example, the Great Resignation of early 2021. Most coverage emphasized shifting priorities as a primary driver of voluntary resignations among the labour force. What was not widely acknowledged was the fact that record numbers of people were reporting an inability to work due to illness.

Figures released in May 2022 by the United Kingdom's Office of National Statistics and the Bank of England indicate that the number of people unable to work due to long-term illness had increased by one-fifth since the start of the pandemic, and is the highest it has been in the past thirty years. In Canada, the number of people who reported they were not looking for work due to illness during the second quarter of 2022 was 31 percent higher than it had been during the last quarter of 2019. This was second only to the record high that occurred during quarter 2 of 2020. In August 2022, a report from the Brookings Institution estimated that 3 million workers in the United States-1.8 percent of the country's workforce-were unable to work due to long Covid.

A Systems Thinking Approach to Invisible Illness

We tend to think of diagnoses as final answers, deduced by medical professionals who translate symptoms into more objective clinical signs. But many chronically ill people, have found that accessing diagnosis is a way to learn the language of their body, to learn how to recognize and respond to its needs, to work with it rather than constantly fighting against it. Some of these people engage in practices of self-diagnosis that take a radically different approach to identifying the pathophysiological underpinnings than the clinical gaze does.

Most chronically ill people are not clinicians, and they do not have access to the highly regulated and gatekept tools that scaffold clinical diagnosis. They cannot order their own CT scans or perform their own blood tests. Instead, they use literature reviews, systems thinking and inductive reasoning to work through a 5-step process, in an example of the Rabbit Hole as Research Method.

Diagram modeling the patient gaze
Diagram showing a five-step process beginning with embodied experiences. These are triangulated through literature reviews, poetry, crowdsourcing, anatomical mapping, "invalid mindfulness" and diaries, to arrive at a symptom vocabulary. Next, patient engage in an iterative cycle of targeted research and pattern recognition During this stage they identify possible physiological components and partial mechanisms from established knowledge about relevant symptoms, tissues and body systems, and identify overlapping components, systems and mechanisms for multiple symptoms. From there, they develop an etiological model and finally identify possible treatments.

The Theranos scandal is evidence of both the demand for ways of doing medical diagnosis outside the boundaries of the clinic and the difficulty of democratizing the clinic's tools and practices. But the concept behind Theranos was never as revolutionary as it has been portrayed, because it didn't seek to fundamentally change how diagnosis is done. To meaningfully transform healthcare, it makes more sense to learn from people who are already doing diagnostic work without the resources of the clinic.