Thinking with Invisible Illness

Stefan Ecks on ideas of Recognition

When you write a book with the goals of reaching a broad audience, it’s so interesting to see different people engage with it. Patient communities, clinicians, scholars, policymakers, a general audience with a connection to the book topic — all of these groups (although varied in their own right) demonstrate how differently people come to a similar topic. Some people are interested in the history. Others are passionate about the politics. Many are interested in the stories. Others are interested in how to support or love better people in their lives suffering with an invisible illness.

Some people reading my blog might be interested in Stefan Eck’s more theoretical interpretation of my work on the structural position of invisible illness. He writes in the opening to his piece, “Invisible illness is not the name for a class of medically mysterious conditions. It is the name for a structural position in modern recognition regimes: suffering that is real in lived coordination but cannot secure stable passage through the symbolic classifications that gate care, income, legitimacy, and social support.”

I was struck how some people reading the book (or maybe glancing at it without deeply reading it?) worried that my use of the term “hysteria” meant that I conflated it with long COVID. This is obviously not the case - and I argue very clearly how these categories have been used to harm patients, and mostly women, over centuries in medicine. The argument is political and critical of the frames that are often used to prevent people from getting well by accessing the medical system.

Ecks put this deep think on my work this way - using the theoretical nod to “recognition.” He writes, “Recognition, this essay argues, is not a single event in which medicine sees or fails to see suffering. It is a distributed institutional achievement. It depends on the partial alignment of clinicians, diagnostic systems, employers, insurers, welfare agencies, families, patient communities, and digital platforms. Invisible illness names the structural position occupied by suffering that is real in lived coordination but cannot secure stable passage across this recognition chain.”

In the conclusion to his article, Ecks further explains his reading of my work through the theoretical lens of recognition:

“The recognition crisis is not accidental. It is structurally produced by the convergence of medical certification coupled to economic entitlement, the institutional elimination of non-medical explanations, the formalisation of employment as the primary income source, the cultural legitimation of patient voice, and the emergence of digital platforms that make community formation and advocacy scalable. When these conditions converge, the recognition crisis and the patient advocacy response become structurally predictable. They are the systematic output of a configuration that was never designed for the range of human suffering it now claims to govern.

Recognition, properly understood, is not a simple seeing but a consequential institutional classification, and its distribution across multiple regimes means that its failure is correspondingly distributed across the clinical encounter, the insurance decision, the employer’s response, the family’s reaction, and the public’s understanding. Invisible illness names the structural position of suffering that cannot achieve stable alignment across this chain. The person in this position is not unseen. They are caught between a lived reality that is unambiguous in its immediacy and a symbolic system that lacks the categories to make that reality institutionally transmissible.”

What a gift it is to read a deep analysis of one’s work. Social scientists have failed to engage deeply around what complex chronic illness can teach us about medicine (with of course exceptions, especially my brilliant colleagues in the Chronic Collective). I hope this work is read alongside and amplifies the deep thinking of others. We still have so much to learn, and so many opportunities to engage and push for structural change in medicine to make visible the needs of so many patients who are pushed to the side.