Chronic Illness and Social Media

Source: Katie Willard Virant

As human beings, we continually navigate the line between privacy and connection. There are facets of our experience that we keep to ourselves; there are other facets that we share with close connections; and there are still other facets that we make public. We’re constantly negotiating what we share about ourselves and how we share it. If we share too little, we risk isolation. If we share too much, we risk exploitation.

For people living with chronic illness, their illness identity becomes part of this calculation. To whom do I reveal I have an illness? Which parts of my illness experience do I keep private; which parts do I share; and how do I make those decisions? While these issues have always been present, the Internet has changed the landscape in which we live with illness. This month’s column takes a look at how social media affects both the ways we communicate our illness experience and also the ways we see ourselves as people living with illness.

“[T]he internet has revolutionized the interactive experience of illness, transforming illness experience for many people from a private to a public experience” (Conrad, Bandini, & Vasquez, 2016). People who live with illness have always been among us. Because so many illnesses are invisible, though, we’re not aware of the number of people we pass on the street - or even people in our workplaces, classrooms, and neighborhoods - who identify as chronically ill. The internet has changed that. Hop on to any social media platform and you’ll find text, photographs, memes, and links about people’s chronic illness experiences. There are beach day photographs of people with ostomies and surgical scars. There are memes about the day-to-day drudgery of chronic illness fatigue. There are links to fundraisers for disease research. There are chats and groups dedicated to support and information for people living with illness. The information is widespread, specific, and decidedly public. This shift from private to public affects us all.

Normalization of Illness

Many people who live with chronic illness fear that their illness will cause healthy people to recoil from them. Their symptoms may involve body parts and functions that typically are not discussed. They may fear being labelled deficient, different and weak. Silence reinforces these fears, causing many people to hide their illness identities. This secrecy can create anxiety about the possibility of symptoms showing up that are impossible to cover. “What if I get sick at work?” and “What if I’m out with friends and I start to flare?” are common worries.

Social media posts from and about people living with chronic illness make the invisible visible. With continued exposure to others’ experiences, we begin to believe that we are neither alone nor embarrassing. Living with illness is simply part of being human for many people. Instagram diaries of people’s lives make this clear, as a photograph of an IV may be sandwiched between a picture of a cake fresh out of the oven and a walk in the garden. “Baked a cake, got an infusion, enjoyed some flowers.” The implicit message is that chronic illness is a part of life that needn’t be hidden from public view.

Education, Validation and Advocacy

In addition to normalizing chronic illness, social media posts educate the general public about the difficulties of living with disease. First-person accounts allow an up-close view of the day-to-day struggles of managing illness. Consequently, there is more exposure to knowledge about what it’s like to be chronically ill. For people living with chronic illness, there is validation in seeing other people’s descriptions of their challenges. An image or quote or narrative may resonate, causing the observer/reader to feel that her own experience is seen, known and shared (Gonzalez-Polledo & Tarr, 2014).

People living with chronic illness who are active on social media describe feeling empowered by their posts about their illness (Johnson et al., 2020). Using their own experience to support and educate others increases their sense of purpose and meaning. The interactive nature of social media allows giving (sharing one’s own experiences and thoughts) and receiving (taking in supportive and encouraging responses to posts). This reciprocity enhances a feeling of connection and relatedness.

A Variety of Ways to Use Social Media

Social media allows for varying levels of engagement, creating opportunities for agency and choice (Maslen & Lupton, 2019). One can read posts as a lurker, preserving anonymity. One can “like” a post, suggesting agreement and support without further comment. One can comment on a post, responding to it in more detail than a simple “like”. One can create a post, sharing one’s own thoughts, feelings, and experiences. Public and private settings dictate who can see posts, and commenting features can be turned on and off to control responses.

Take a moment to think about how you use social media as a person living with chronic illness. Do you scroll by others’ social media posts about illness, feeling uncomfortable and annoyed? Do you occasionally or regularly look at content about illness? Do you ever “like” posts about illness? Do you post your own content? If so, what are you hoping for and what do you fear? There’s no “right” way to use social media, but it is worth tuning into how we use it with respect to our illness and how we feel about it.

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What do we want to convey about our illness experience to others and, ultimately, to ourselves? Engaging with social media - and reflecting on the ways we engage - can be a hands-on way of grappling with this question.