How Chronic Disease Communities Use Social Media

• by Caroline Bean , Lindsay Siegel , July 26, 2017

“But you don’t look sick!”

“Have you tried eating gluten-free?”

“It’s all a state of mind!”

People with chronic conditions hear these phrases daily. In a world where chronic conditions and chronic pain are often misunderstood, people with these illnesses turn to each other for advice, encouragement, or commiseration. The internet — forums and social media — complement or even supplant face-to-face community support groups. (Indeed, members of some communities, like teens and young adults with Cystic Fibrosis, literally risk death if they interact with each other face-to-face and must connect virtually.) When people with chronic conditions feel misunderstood, isolated, or even triumphant, they turn to social communities to connect with people who share their experiences.

Social Platforms

Like most communities, chronic disease communities utilize social channels in different ways. The main channels for chronic pain communities are Instagram, Tumblr and Facebook.

Younger people with chronic disease turn towards Instagram and Tumblr — two platforms that utilize hashtags or tagging for content discovery. Community members on these platforms find each other through tagged content. When posting their own images, they self-identify through hashtags. For example, people who use #spoonie are people living with a chronic condition who measure their abilities and energy in a finite number of daily “spoons.” The #spoonie community is wide-reaching, including a variety of conditions and illnesses.

By tagging Instagram posts with hashtags like #spoonie, people with chronic conditions bear witness to the realities of their condition, whether they’re feeling low, are in the hospital, or are just living life every day. When they are feeling successful, they communicate with people just like them through hashtags that reflect their warrior spirit (people with diabetes use “#diabadass”). Then, other community members can find this content by searching the tag and comment with encouragement or commiseration.

Whereas on Instagram, people curate their appearance to the world, Tumblr is where people go to be “uncensored.” On Tumblr, people get personal through long-form diary-type content, memes, or GIFs that address realities of their situation. They find humor in the often painful or frustrating shared truths and reblog, or share them with their own networks on their own Tumblr blog. The connections here are made less through commenting and more through sharing relevant content, aggregated through hashtags like #chronic illness or #spoonie humor. The Tumblr tagging system allows people with chronic conditions connect with content that others in the community will relate to.

Facebook is the gathering place for chronic disease communities generally older than 35, like people with MS or COPD. Here, people find value in condition-specific tips and education. While they respond to encouraging messages like quotes about staying positive or about faith, they often use comments as an outlet for lengthy venting. For information gathering, they check to see if others in the community are experiencing the same side effects, confirm questions about dosing, or request recommendations for doctors. They also seek and give affirmation and encouragement.

Facebook groups (vs. Facebook community pages) allow more privacy for discussing more sensitive symptoms (like bowel issues or sexual intimacy issues) or conditions (i.e. hidradenitis suppurativa) that can be stigmatized by mainstream communities.

Content that Resonates

Content that resonates in chronic condition communities addresses the “shared truths” of that community. These shared truths are the insider information, nuances and particularities individuals in these communities deal with every day. When a social post is “spot on” when addressing that shared truth, it hits a nerve and the community shares and engages with that content in a way that can make it “go viral.”

Healthcare brands can most effectively engage with chronic communities by sharing this empathetic social content that demonstrates an innate understanding of the realities of the condition and puts into words and pictures what the community members feel. In addition to sharing relatable content, healthcare brands can add value in chronic condition communities through human community management that adds to, but doesn’t disrupt, conversations among members of the community. Brands build trust with the community by demonstrating first-hand knowledge of the community and an understanding how community members like to utilize their preferred social platform.