One takeaway: Physical and psychological pain are inextricably linked, but doctors have a tendency to treat both with more painkillers.Īlso last year, University of Washington doctors Jane Ballantyne and Mark Sullivan argued that a too-simplistic metric for assessing pain in patients could be contributing to the “liberal use of opioids” among “Americans with unrelieved chronic pain.” They write: “Suffering may be related as much to the meaning of pain as to its intensity.” The experience of chronic pain is “associated with brain regions involved in emotion and reward” and “over time, pain intensity becomes linked … with emotional and psychosocial factors.” Among that demo, reports of chronic pain, loneliness, and depression coincided with increases in opioid addiction, alcohol abuse, and suicide. In a paper published last year, Princeton economists Anne Case and Angus Deaton charted a serious increase in the mortality rate for middle-aged white Americans.
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These networks may not be staffed with medical experts, but they’re full of people who understand how to honor and explain the social and emotional aspects of chronic illness. As Gonzalez-Polledo puts it, patients’ experiences are sometimes “deemed irrelevant, time-consuming, emotional, insufficiently articulate, or unhelpful.”īut back online, a legion of fellow sufferers is waiting, ready to offer a non-expert opinion or recommend some new nonscientific treatment.
When a patient’s symptoms don’t match up with an obvious diagnosis, appointments can end with the patient feeling dismissed. Pain networks don’t always express confidence in the medical establishment, and not all doctors are jazzed by patients who rely on social media to understand and express their illnesses. Translating pain into Tumblr’s rhetorical tics and visual aesthetics helps make the experience feel familiar, almost relatable, even to people who can’t pronounce fibromyalgia. On Tumblr, pain is expressed through a GIF’d Leonardo DiCaprio line, a few seconds of hypnotic torture porn, a sassy retort attributed to a meme called “ Chronic Illness Cat,” or a sassy Some E-Card tailored to the spoonie experience. Meanwhile, on Tumblr, communities of chronically ill users express feelings of pain and frustration through that network’s particular style, which elevates pop cultural references, memetic image macros, and abstract Web art. They offer relief, if not from the symptoms of pain, then from the burden of explanation. Social networks “offer opportunities for people without pain to better understand the experience of having pain,” she continues, but they also offer chronically ill people the chance to convene with others who understand what they’re going through. These networks have created their own “alternative pain scales” that measure “social over physical aspects of pain that are often unacknowledged in clinical pain assessments,” Gonzalez-Polledo writes.
She found a cluster of “pain worlds,” places where people suffering from invisible illnesses like fibromyalgia, migraines, Crohn’s disease, and arthritis can express themselves not on a numerical scale but through a network of selfies, confessional diary posts, and memes. For a paper published last month, London School of Economics ethnographer Elena Gonzalez-Polledo studied communities of chronically ill people on Instagram and Tumblr.
It hurts, but it can also alienate their friends and family, prevent them from achieving their goals, and make them feel misunderstood, dejected, or depressed. And so doctors and nurses will often ask patients to pinpoint their pain on an 11-point range-how bad does it feel, on a scale from zero to 10?įor some patients, pain is not just a number. For nurses, the standard definition is “whatever the experiencing person says it is, existing whenever the experiencing person says it does.” But diagnoses and treatments require mapping that experience onto something approaching an objective measure.
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