Sickness has historically been an isolating experience. Contagious illness was often quarantined. Social stigma led to the ill being ostracized. The inability to work depleted economic resources and disrupted socio-economic support networks. Illness also limited the ability of many to be physically present in the community.

Non-profits and advocacy groups have helped remedy many of these situations, especially by connecting those with acute and chronic illnesses to one another. But today, more than ever before, that connection has gone digital. These communities remain very different from in-person networks. And as they have taken a central role in facilitating discussions about diagnosis and treatment, it’s more important than ever that we understand what sets them apart.

The boundaries of digital disease communities are porous and elastic. Labels like neurodiverse have grown over the last few years from autism spectrum disorders to include ADHD, ADD, and more. Thus, group definitions can expand or shrink in scope (elasticity) based on a communal definition of a label, but some may include or exclude themselves (porousness) based on that label.

They may include more than just the ill party. Spouses might be looking to support their wife or husband on their cancer journey. A child might be helping parents through a health crisis. An entire family might be navigating rare disease. Caregivers can be extended relations or friends. In any case, a proportion of participants and onlookers in digital communities will be allied to but not necessarily stricken with illness.

The degree of anonymity is relative to the platform. Message boards or Reddit offer rich insight into disease communities but anonymity curtails some of it’s usefulness. At the same time, Instagram or Facebook might tell us much about the individual, but can limit discussion topics since they are personally identifiable. Understanding how the platform shapes participation is key to understanding the broader shape of the community.  

Disease discussions are largely call and response. New patients come in and ask questions that give experienced members of the community the opportunity to share their experiences and advice. This in turn can impact how those new to communities navigate their illness – from the type of doctor they seek (“go see a specialist”) to the treatments they wish to consider.

Language, symbols, and shared narratives define patients’ understanding of their disease. You might hear chronic fatigue sufferers talk about their spoons, or ability to expend effort to confront their symptoms. Most cancer patients can connect over the moment of diagnosis. Rare disease patients share the common narrative of frustration over the amount of time it took to diagnose an illness. Certain shared symbols and experiences take a central and significant role for most disease communities.

Groups help their members decide how to contextualize disease in their lives. “MS warriors” and “cancer fighters” largely draw action-oriented language around how the community views it’s experience with illness. You might suffer from insomnia, but eventually become an insomniac. Identity-based language helps establish community norms.

People are often transient based on the presence of symptoms. Whereas in person advocacy groups tend to have “remainers” even after symptoms dissipate, digital communities often help those who are symptomatic and searching for answers. Many times, this is out of their isolation, confusion, or difficulty navigating the healthcare system. Once a disease is controlled, even when chronic, many may cease participating in the group.

Communities create their own celebrities. Maybe it’s the severe asthma patient who climbed Everest or the HCP with the latest and greatest breakthrough about a disease. There are roles for both those living with a disease and those who treat them to help disseminate information within a disease community. They are trusted, well known, and well-liked by the community and therefore important to apprising communities of new clinical updates and breakthroughs.