Columbus, OH – Emojis, GIFs, selfies, and memes—they’re quick, visual, global and they’re everywhere. And while we typically think of these alternative forms of communication as fun and frivolous, there is a growing trend amongst chronically ill patients to leverage these tools to express their pain. Within social media, “pain worlds” have sprung up. Places where people suffering from chronic and often invisible illnesses (like Crohn’s, fibromyalgia, and migraines) have formed communities to share their experiences in creative ways.

Clinical methods of evaluating and rating pain fall well short of capturing the full scope of impact that a chronic illness can have. These communities have essentially created their own “alternative pain scales,” and beyond the physical pain, they are able to capture the emotional and social toll of a disease. In addition to the relief that having a communal outlet brings, this trend of expression on social media has another unique benefit–it can allow people without the condition or pain to better understand what the experience is like. Much better than a number on a scale or words alone could do.

Why it matters:

Understanding the changing ways that patients are expressing their condition is essential to better diagnosing, treating, and supporting them in their journey. The rise of these “pain communities” in part speaks to the shortcomings of conventional clinical scales and measurements to capture what people are truly feeling. There is an opportunity for HCPs and healthcare marketers to learn from these new visual expression techniques and to incorporate them into new (and more relevant) techniques and support tools.

Read more about this trend on Slate, and check out the work of Elena Gonzales-Polledo, an ethnographer who studied communities of chronically ill patients, here.

About the Author:

Jeffrey Giermek