How Tests Make Experience Fact, Part 2

In the previous post about allergy testing, I talked a little bit about the STS perspective on the function of scientific tests. In this post, I will talk a little bit more about the experience side of things. It’s a bit more philosophical, a little bit longer, a little bit feminist, and cites a couple historical cases. I’d love to get feedback in the comments on whether this kind of post is interesting to readers who are less specialized in the social sciences!

Social scientists and philosophers, especially those influenced by feminist movements, have often worried that patient experience is discounted by modern medicine. To diagnose, physicians often run tests and make observations that bypass the patient’s story about their illness. Blood tests that spit out a numerical measure of the concentration of certain molecules in the blood – like antigen-specific IgE tests (blood allergy tests) – are a prime example of this.

Influential French philosopher Michel Foucault identifies the roots of these modern tendencies as occurring alongside “the birth of the clinic.” Foucault explains that modern medicine was “born” in the teaching hospitals of the late 18th and 19th centuries. For the first time, physicians were able and interested in looking at collections of patients, which allowed them to understand both the “average” function of the human body as well as the various ways in which it went wrong. Importantly, they developed tools and techniques (like stethoscopes and certain palpation techniques) that gave them direct access to the state of the patient’s body, without having to rely on the patient’s word. This was a powerful new paradigm for making a diagnosis.

In many ways, this was a huge boon for the practice of medicine. With more patients to see in teaching hospitals, doctors could develop new diagnostic classifications that could lead to more highly differentiated treatments. Diagnosis wasn’t led astray by a patient’s inaccurate recollection or omission of certain symptoms.

At the same time, judgments were made about what symptoms or conditions made someone a “deviant” and not worthy of help. Certain symptoms could be seen as characteristic of certain groups of people, allowing both the symptoms and the people to be dismissed, ignored. This was particularly the case for women. As suburbanization took hold in the United States and in parts of Europe, middle-class women who were increasingly socially isolated were given tranquilizers and excluded from social life on a massive scale. Moreover, information about serious illnesses like cancer were withheld from women on the assumption that the information would only upset them and that they were not entitled to know. Information about reproduction and the range of “normal” characteristics of the female body were also hard to come by outside of the medical establishment – a profession that was overwhelmingly male for most of the 20th century.

In her article, “Immodest Witnessing: The Epistemology of Vaginal Self-Examination in the US Feminist Self-help Movement,” Michelle Murphy, a historical scholar who I greatly admire, talks about how some groups of middle-class, mostly white women in the United States in the 1970s used consciousness-raising techniques to share their experiences of their bodies. It was a way for them to feel less alone through talking about and observing their bodily sensations. They tracked what happened over the course of their menstrual cycles. They learned how to do simple things to take care of small health issues at home. They collectively recorded vast amounts of data about women’s reproductive health and communicated what they learned through pamphlets and books like Our Bodies, Our Selves. Phrases like “reproductive health” and “well-woman visit” came out of these movements: these phrases were meant to emphasize that the bodily changes that occur at various stages of biological reproduction and variations in reproductive anatomy were normal, not a sign of ill health.

They accomplished this over the protests (and sometimes outright persecution) of a medical establishment that had nothing better to offer. Sharing their experiences was a source of social strength. Just as importantly, it was a resource for generating knowledge about their bodies and learning how to care for themselves.

The author's allergy test
The author confirms her environmental sensitivities.

This history is the reason I am so fascinated by the role of patient experience (often present in the form of a detailed patient history) in diagnosing and managing allergies. For both better and worse, the patient’s word has been minimized in many areas of medicine for a long time, replaced by test results, palpation, listening to the sounds of the body, and seeing the textures and tone of skin and hair. Adversarial feminist movements in the United States were responsible for bringing patient experience back into reproductive health. Scholars of women’s health and other health movements talk about bringing experience into diagnosis and patient care as an uphill battle.

From what I understand of the history and current practice of allergy medicine, patient experience was never marginalized to a very great extent. As several allergists have told me during the course of my research, the history is THE BEST diagnostic tool; tests are most useful when used to confirm suspected causes of symptoms.

I’m not deeply trained in historical methods, so I don’t think I’ll be the one to shift the historical conversation about patient experience in medicine. I do think it’s really interesting to see how allergy medicine is somewhat special in this regard. And, perhaps, other specialties could learn a lot from allergists’ use of the patient history.

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