In this tech-allied world moving at the speed of light, patients with rheumatic diseases scroll through their feeds long before they ever reach our clinic waiting rooms. A survey found that one in five Americans consults TikTok before their own doctor when seeking information about a health condition, and this will certainly be higher among younger patients managing chronic, complex diseases. Social media has become the first point of contact between a patient and their diagnosis. The question is whether we, as rheumatologists, intend to show up in that conversation.

The online footprint of rheumatic diseases is surprisingly large. Social media scraping tools have shown that even conditions with a relatively low prevalence carve out a sizeable online niche, driven almost entirely by user-generated content. Patients and community members fill a vacuum that the medical community has left behind. Patient support groups for autoimmune conditions were emerging on Facebook as early as 2007, because patients recognised what we were slow to: the short clinic appointment was never going to be enough. The unmet need for information, emotional solidarity, and reassurance does not disappear after a consultation. It finds an evolved home online, where faith healers, wellness influencers, and celebrity anecdotes are often the loudest voices in the room.

The consequences are predictable. Unverified sources consistently attract higher engagement than evidence, and misleading videos on social media outperform accurate ones in engagement metrics. Misinformation is not more persuasive: it arrived first with greater fanfare. The new generation of rheumatologists has already begun stepping into this space, taking to social media to debunk myths and provide reliable health information, and the response from patients has been striking.

So, what can we do? We do not need to become influencers. A single well-crafted post clarifying what a flare actually feels like, or what a positive ANA does and does not mean, can travel farther than a conference lecture. Rheumatology organisations should consider developing structured online campaigns to raise awareness, while instituting policies to manage misinformation. The IRA is now leading exactly this kind of effort. At the individual level, even occasional engagement, answering common questions, signposting reliable resources, or contextualising news stories, builds trust and visibility for evidence-based voices.

I end with a reflection on the sentiment data emerging from studies of rheumatic diseases online. Resilience and shared identity dominate over despair. Patients are not merely venting; they are building something. When clinicians enter this space with empathetic content, we do not disrupt that community. We become part of it, on their terms. Patient education has always been part of our job. The scroll is just a new ward round.

References

1. Childers L. Rheumatologists turn to social media to educate patients and combat misinformation. The Rheumatologist. October 2023.
2. Ghosh S, Chattopadhyay A. Living for the ‘gram: analysing the online footprint of lupus using a qualitative social media listening tool. Clinical Rheumatology. 2026 Feb 11:1-6.
3. Afsar AP, Ghosh S, et al. Content analysis of patient support groups related to myositis on Facebook. Clinical rheumatology. 2024 Feb;43(2):725-32.
4. CORDIALITY Review Group. Social media in advancing equity and collaboration in rheumatology. RMD Open. 2025;11(1):e005490.