How Social Media Builds Community for Invisible Illness Patients

Social listening insights into online invisible illness patient communities

Since May is Mental Health Awareness Month, we wanted to delve into invisible illnesses or health conditions that millions of Americans live with daily but aren't readily apparent to those who don't experience them. In this brief, we'll conduct a demographic analysis on three types of invisible illnesses: Long COVID, Fibromyalgia, and Crohn's Disease looking at age and gender. First, we outline how the demographics of social media users discussing these diseases match the patient demographics presented by peer-reviewed medical research. Second, we examine how social media intelligence shows that people suffering from an invisible illness find community online with other invisible illness patients – even when they don’t share the same illness. 

A definition for invisible illnesses

An invisible illness refers to health conditions that do not have visible signs or visually obvious physical symptoms, making them difficult for others to recognize or understand. While a person may appear healthy on the outside, they might be in significant pain or experience fatigue, cognitive difficulties, or other symptoms that affect their daily functioning and overall well-being. In other words, despite the absence of visible markers, these illnesses can profoundly impact an individual's physical, emotional, and social aspects of life.

Invisible illnesses can encompass various medical conditions, including chronic pain conditions, autoimmune disorders, neurological conditions, mental health disorders, and various other diseases. In this brief, we focus on three: Long COVID, Fibromyalgia, and Crohn's Disease. 

Long COVID
Long COVID, also known as post-acute sequelae of SARS-CoV-2 infection (PASC), refers to a range of persistent or delayed symptoms that people experience weeks or months after the acute phase of their COVID-19 infection. According to the Center for Disease Control (CDC), one in 13 adults in the United States currently suffer from Long COVID symptoms.

Fibromyalgia
Fibromyalgia is a chronic condition characterized by widespread pain, tenderness, and fatigue. Common accompanying symptoms include sleep disturbances, cognitive difficulties, and other symptoms. According to the CDC, 4 million Americans currently have Fibromyalgia. 

Crohn's Disease
Crohn's Disease is a chronic inflammatory bowel disease that primarily affects the gastrointestinal tract, causing symptoms such as abdominal pain, diarrhea, and weight loss. According to the CDC, 3.1 million Americans suffer from irritable bowel syndrome or Crohn’s Disease. 

A look at post volume across Long COVID, Fibromyalgia, and Crohn's Disease

Initially, we looked at the post volume for each invisible illness. The outlier here is Long COVID, which has experienced 201% growth over the last three years – understandably since it only emerged as COVID-19 spread worldwide.

The discussions about Long COVID on social media prompted medical researchers to pay greater attention to the disease, highlighting its significance and promoting research breakthroughs. 

While Fibromyalgia and Crohn's Disease did not experience Long COVID's extensive growth, social media users posted about both of them millions of times over the last three years. Post volume around Fibromyalgia dipped by 21%, but post volume around Crohn's Disease increased by 27%. 

Now that we've uncovered substantive conversations around all three of these invisible illnesses, let's dive into a demographic analysis and compare our social media research with more traditional medical research. 

Figure 1: Post volume attributed to Long COVID, Fibromyalgia, and Crohn’s Disease (May 2020 through May 2023); Infegy Atlas data.

Social listening demographics and research data: Age

First, we'll look at the ages of social media users who post about Crohn's, Fibromyalgia, and Long Covid. Infegy calculates demographic data related to age based on source bio information and text-based clues in what people leave on their accounts (linguistic analysis).

First, let's look at Crohn's Disease. The Crohn's Colitis Foundation notes that symptoms are likely to start for this lifelong chronic condition between the ages of 20 and 30. Infegy Atlas' age data follows this exact trend. People posting about Crohn's Disease were more likely to trend on the younger side than older people. For example, 25% of all posts containing Crohn's-related-content were made by people between the ages of 25 and 34. 

Next, let's look at Fibromyalgia. The Cleveland Clinic explains that people most likely to be diagnosed with the condition are around 40. We see again that Infegy Atlas' age data corroborates these medical findings. People aged 34-44 were most likely to talk about Fibromyalgia. The condition led to that age group with 23% of all posts. 

Finally, we'll look at Long COVID. Harvard Medical School notes that older folks are most likely at risk of Long COVID. Our age demographic data shows a similar correlation of post volume, where older social media users discuss Long COVID-led age groups from 45 through people over 65.

Figure 2: Age histogram attributed to Long COVID, Fibromyalgia, and Crohn’s Disease (May 2020 through May 2023); Infegy Atlas data.

Social listening demographics and research data: Gender

Next, we'll look at gender demographics to see if we can detect similar similarities as we did with social media users' ages. Like with age, Infegy calculates gender based on linguistic and contextual analysis. We find that, as a rule, posts are more likely to contain gender data versus age data. 

First, we'll look at the most significant outlier, Fibromyalgia. Infegy Atlas reports that 82% of all fibromyalgia-related content over the last three years comes from women, while only 18% originates from men. This aligns with the Mayo Clinic's research that "women are more likely to develop fibromyalgia than are men."

A lesser-known fact is that, statistically, Long COVID also affects women more than men. The University of Minnesota notes that women are more likely to develop Long COVID symptoms than men. Social data also corroborates this finding, showing that 62% of Long COVID post volume originates from women. 

Finally, we'll look at Crohn's Disease. Here we see women's share of the conversation slightly leading men's share of the exchange (53% female versus 47% male). This also closely matches the scientific research, which says that the female diagnosis rate for women is 1.1 to 1.8 times higher than for men.

Figure 3: Gender distribution attributed to Long COVID, Fibromyalgia, and Crohn’s Disease (May 2020 through May 2023); Infegy Atlas data.

Social media audience insights: the conversation across invisible illnesses 

Over the last few paragraphs, we've looked at how audience segments of those affected with Crohn's, Long COVID, and Fibromyalgia differ from each other. Now we'll examine how those groups are related. 

We first used Infegy Atlas' Narratives to look at clustering conversations around Fibromyalgia. 

While the majority of clusters deal with the disease itself, there is a significant cluster (light orange in the middle left) that mentions "COVID" and "virus." If you click into that conversation, Long COVID makes up a non-trivial portion. This means that people talking about Fibromyalgia are also talking about Long COVID-related issues. Furthermore, we saw the reverse of this: people talking about Crohn's or Long COVID also mention other autoimmune disorders. 

This close connection of invisible illness-related conversations suggests that while these illnesses might be "invisible" in public, they relate and interact frequently on social media. This showcases social media's ability to bring disparate groups together for support. 

Figure 4: Infegy Narratives clusters relating to Fibromyalgia (May 2020 through May 2023); Infegy Atlas data.

The reliability of social media analytics in a research mix

In conclusion, social media platforms have provided a space for individuals affected by invisible illnesses such as Long COVID, Fibromyalgia, and Crohn's Disease to congregate and share their experiences. 

Our analysis revealed that the demographics of social media users discussing these illnesses align closely with those presented in peer-reviewed medical research. Moreover, cross-conversations between these diseases indicate that individuals find community and support by discussing their struggles with similar conditions online. These findings underscore the significance of social media as a platform for raising awareness, providing support, and fostering connections among those living with invisible illnesses.

Understanding Invisible Illness Communities Online

Discover how social media demographics for Long COVID, Fibromyalgia, and Crohn's Disease align with medical research, fostering support and awareness in invisible illness communities.

What Are Invisible Illnesses?

Invisible illnesses are conditions with no obvious symptoms, like chronic pain and fatigue. Despite outward health, they significantly impact individuals' lives, including Long COVID, Fibromyalgia, and Crohn's Disease.

Long COVID: A Deep Dive

Long COVID, affecting 1 in 13 U.S. adults, has seen a 201% growth in social media discussions, driving increased attention and research breakthroughs.

Fibromyalgia Insights

Fibromyalgia impacts 4 million Americans, with 82% of social media posts from women, reflecting medical findings that women are more prone to the condition.

Examining Crohn's Disease

Crohn's Disease, affecting millions, sees social media users mainly aged 20-30 discussing it, aligning with research. Female discussions slightly exceed male mentions.

Demographics and Invisible Illness Conversations

Social media shows demographic trends: younger users discuss Crohn’s, middle-aged users focus on Fibromyalgia, and older users talk about Long COVID.

Gender Dynamics in Online Discussions

Women dominate online discussions of Fibromyalgia (82%) and Long COVID (62%), with Crohn’s slightly more balanced between genders.

Shared Online Conversations

Discussions across Long COVID, Fibromyalgia, and Crohn’s Diseases reveal users frequently mention other autoimmune disorders, highlighting shared community support.

The Role of Social Media in Invisible Illness Research

Social media is vital in raising awareness, providing support, and connecting those affected by invisible illnesses, aligning with traditional research demographics.