More often than not, pain is subjective. According to NursingWorld.com, the definition of pain is, “whatever the experiencing person says it is, existing whenever the experiencing person says it does.” However, this subjectivity is often disregarded. Patients are asked to rate their pain from zero to ten, disregarding the fact that one person’s 4 may be another person’s 8. Pain is not just a number; it does not only hurt, but also has the power to hurt a patient’s relationship with those around her/him. 

In a paper published in 2016, social anthropologist and professor at the University of London Elena Gonzalez-Polledo explored the dynamics of pain communication through social media platforms. Besides being accessible to a global audience, Gonzalez-Polledo found that social media websites were ideal devices for health communication for a very important reason: social media forms work against mainstream biomedical frameworks. Gonzalez-Polledo found that patients could describe their pain through photos, selfies, gifs and emojis rather than just numbers. In other words, social media offers relief in the form of expression and explanation.

A simple search of a chronic illness on social media outlets like Twitter, Facebook, Instagram, and so on can result in a plethora of images attempting to give a physical representation to pain, from cartoons to photos of pills and hospital selfies. While some take to social media platforms to give their pain a physical depiction, others use it to tell their stories to a widespread audience and form a community. One such blogger, Christine Miserandino, took to her website butyoudontlooksick.com to write a piece entitled The Spoon Theory. In her piece, Miserandino talks with a friend over dinner and struggles to explain her chronic pain. Exasperated, she grabs all the spoons of the table and asks her friend to list everything she does in a typical day. With each chore and social interaction, Miserandino drops a spoon to symbolize the stores of energy she has to exert on a daily basis. Since her post, Miserandino has gained a substantial number of followers called “spoonies” who can relate to her story.

Other social media movements have also been dedicated to helping those with chronic pain relate to others. The hash tag, #BuildALadder, created by youtubers Simon and Martina, aims to allow those suffering from pain and depression to talk about what small first steps they take in order to cope. In their video entitled “How I Deal with Chronic Pain”, Martina explains that she suffers from Ehlers-Danlos Syndrome, a connective tissue disorder. On days when her pain is especially unbearable, Martina breaks down her day into small steps, the first being to get out of bed and the second to get down the stairs. 

When asked to rate their pain on a scale of 1 to 10, patients may give a higher rating in an attempt to express their anguish. It’s not that their pain became worse, but that it never fully went away. For some patients, online platforms such as blogs, YouTube, Instagram, and Twitter may offer a better, more welcoming space to express their situations. As Miserandino would put it, social media allows individuals to connect with their other fellow “spoonies”.  

References:

Bernhofer, E., (October 25, 2011) "Ethics and Pain Management in Hospitalized Patients" OJIN: The Online Journal of Issues in Nursing Vol. 17 No. 1.

Gonzalez-Polledo, Elena. “Chronic Media Worlds: Social Media and the Problem of Pain Communication on Tumblr.” Social Media Society, vol. 2, no. 1, 2016, p. 205630511662888., doi:10.1177/2056305116628887.

Miserandino, Christine. “The Spoon Theory Written by Christine Miserandino.” But You Dont Look Sick? Support for Those with Invisible Illness or Chronic Illness, 26 Apr. 2013, www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/.