Pain is subjective. 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. 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?
For some patients, pain is not just a number. 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. For a paper published last month, London School of Economics ethnographer Elena Gonzalez-Polledo studied communities of chronically ill people on Instagram and Tumblr. 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. 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. 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. They offer relief, if not from the symptoms of pain, then from the burden of explanation.
In many of these online communities, tangible objects represent intangible feelings. Blogger and lupus advocate Christine Miserandino has an analogy for chronic illness that she calls the “Spoon Theory.” Out at dinner one night, Miserandino collected all the spoons at the table, then dropped them one by one to represent the limited stores of energy she’s forced to exert with every little chore and social interaction. The spoon has now become an emblem of invisible pain. On her website, ButYouDontLookSick.com, Miserandino sells Spoon Theory posters and a series of T-shirts, teddy bears, and baby onesies that ask: “Got Spoons?”
Across the Internet, the spoon has been elevated into an identity. Legions of people suffering from chronic illnesses call themselves “spoonies,” tagging the term on Instagram and Tumblr, and creating Web art and digital badges featuring spoons.
Pills are an even more visceral stand-in for the feeling of pain. Scan the #spoonies or #chronicillness tags on Instagram and Tumblr, and you’ll find pictures of bright orange prescription bottles stacked in rows, over-the-counter pain meds spilling off the bedside table, a pile of rainbow-colored pills gathered on an outstretched tongue. As Gonzalez-Polledo puts it, “the quantity of pills shows some objective recognition of the pain.” The “medication is a material reality of their suffering.”
Pill shots and other provocative displays of illness—a girl’s hospital selfie, featuring a tiny tube snaking up her nose, provides a physical confirmation of her often invisible Crohn’s disease—stand in sharp relief to the sweeping landscapes, smiling selfies, and posed dinner plates that populate the typical Instagram feed. In an earlier study published in New Media & Society, Gonzalez-Polledo wrote that pain networks not only help “make pain visible” but also “make chronicity visible” by amassing a collection of images representing the passage of time. Scroll back through a spoonie’s Instagram feed, and you can find hundreds of images dating back months and years. Together they chronicle the unrelenting experience of chronic illness, or else the ebbs and flows of relapses and recoveries as “pain periodically shifts from background to foreground.”
But another class of pain posts takes the opposite route, trafficking in images that mimic Instagram’s happy-go-lucky aesthetic, then complicating the image with a caption stuffed with notes on dire symptoms, complicated treatments, or emotional despair. Take this spoonie’s pretty, posed selfie, paired with a long caption that begins: “I have been sooo so incredibly unwell for the past week.” Or the Instagram account Fibromyalgia Inspirational, which shares images of relaxing nature photos paired with striking symptoms: hair loss, reclusiveness, “struggling to climb the stairs.”
I asked Erica Lupinacci, co-founder of the chronic illness support network Suffering the Silence, about this trend. People living with invisible illnesses “experience a lot of judgment and misunderstanding because we ‘don’t look sick,’ ” she told me. These ostensibly normal images tell outsiders that “though you may not see it in our appearance,” chronic pain is “something that affects our identity and all aspects of our life.” For people inside these social networks, sickness and pain aren’t just things that happen to them—they are a core part of who they are.
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. 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. 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.
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. When a patient’s symptoms don’t match up with an obvious diagnosis, appointments can end with the patient feeling dismissed. As Gonzalez-Polledo puts it, patients’ experiences are sometimes “deemed irrelevant, time-consuming, emotional, insufficiently articulate, or unhelpful.”
But back online, a legion of fellow sufferers is waiting, ready to offer a non-expert opinion or recommend some new nonscientific treatment. 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. 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. Among that demo, reports of chronic pain, loneliness, and depression coincided with increases in opioid addiction, alcohol abuse, and suicide. One takeaway: Physical and psychological pain are inextricably linked, but doctors have a tendency to treat both with more painkillers.
Also 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.”
When patients are asked to rate their pain on a scale from zero to 10, they may report higher levels of pain in an attempt to communicate their “helplessness and hopelessness.” The problem is not that it hurts more; it’s that it just never stops hurting. For some patients, Instagram and Tumblr are better places to express that feeling than the doctor’s office. As Ballantyne and Sullivan put it, doctors are still struggling to “adequately capture the burden or the meaning of chronic pain for a particular patient.” A fellow spoonie just gets it.