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[Lisieux Eyer de Jesus]

"Indeed, methods of measuring, writing and talking about pain can have devastating and far-reaching consequences. It is in the wake of the current opioid addiction epidemic that the medical community has addressed the problematic nature of scales. I wish to preface this account of pain scales’ connection with the opioid epidemic by noting that I am not criticising any person whose means of managing pain includes opioids: rather, I wish to establish an account of how language to describe and measure pain, alongside outside forces including pharmaceutical representatives, reimbursement processes and the urgency of palliating pain, has become connected with a spiralling epidemic in which thousands have developed drug dependencies or died.5 A notable example of the profound impatct of pain’s conceptualisation was its designation as the ‘fifth vital sign’ (5VS), a campaign adopted by US clinicians in the 1990s (Levy, Sturgess, and Mills 2018, 435). In 1990, Dr Mitchell Max decried pain medicine’s lack of advancement, issuing the imperative to ‘make pain visible’ by giving all clinicians ‘bedside tools’ for rapid assessment (David 2017). In October 2000, then-US

President Bill Clinton designated the 2000s the Decade of Pain Control and Research; this period placed more onus on clinicians to rapidly assess and alleviate pain. Pain was conceptualised as an ’objective measurement of the essential physiological functions of a living organism’, alongside body temperature, blood pressure, pulse and respiration (Sapra, Malik, and Bhandari 2022). Alongside this, clinicians accepted reports that pain patients’ addiction to narcotics was extremely rare (Porter and Jick 1980). The 5VS campaign emphasised monitoring and treating pain quickly, and increased clinicians’ reliance on rating scales to assess and reduce physical suffering. In other words, the 5VS campaign and resultant over-reliance on pain scales were borne of a desire to alleviate pain. However, their unintended catastrophic consequences include the overprescription and misuse of opioid drugs, addiction and death. The Decade of Pain Control saw clinicians overprescribing narcotic analgesics such as OxyContin to ease pain. Two decades later, 5VS was criticised as a ‘contributo[r] to the opioid crisis’ through its excessive emphasis on relieving pain and opioid overprescription. "

"When we go to see doctors and specialists, we are often asked to rate our pain on a 1 to 10 scale. I always get confused by this instrument, partly because I don’t know what each scale means. Is 1 “no pain,” and would 10 be “the worst pain imaginable,” such as being burned alive or torn limb from limb? Using that standard, it would seem arrogant for me to claim even an 8 if I was still able to function. So I use 1 to 7, with my 7 being “bad,” though I don’t tell my doctor this. That puts my normal pain at 3, but I’m not sure how it helps my doctor if I repeat the number 3 over and over."

"I find these questions about my conditions frustrating because I am always addressed as an injured young person who will heal, not as a disabled young woman who uses walking aids as her normal way of traversing the world."

"These exchanges suggest that there is something powerful about the impressive materiality of a chunky biomedical textbook, and perhaps less so for the quieter, smaller texts which contain stories, ideas, theories. Perhaps this is connected to value judgements about their subject areas: the overt ‘value’ of studying the STEM (science, technology, engineering and mathematics) subjects, and notions that studying fiction or the humanities is whimsical, less germane to society’s (medical) problems. But unless we start printing chronic pain narratives in large hardback books, pages divided into columns, when will it be possible to elevate personal accounts of pain to the importance of scientific theories or clinical protocols?"

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Lisieux Eyer de Jesus, TCBC/ T-CIPE