Social Media and Chronic Illness

Source: Katie Willard Virant

#chronicillness

#spoonielife

#autoimmunedisease

#disability

These are just a few of the hashtags that point to social media content about chronic illness. Twitter, Instagram, Facebook, TikTok, and probably some new platform that only the cool kids know about are places where people are communicating about chronic illness. What is the function of these communications? How do they affect the way chronic illness is experienced and perceived?

Social media storytelling and chronic illness

Social media storytelling enables people to share content instantaneously with the public (persons both known and unknown to the content creator). Previously, sharing content widely required acceptance from gatekeepers (e.g., media editors or museum curators). Now, with the push of a button, anyone can publish content that they deem worthwhile (Tembeck, 2016).

Prior to social media, there were a few books and films (generally upbeat and hopeful) about living with—or, more accurately, triumphing over—chronic illness. It was understood that the details of chronic illness were private—not fit for good people to discuss. The real details of living with illness were spoken of in elusive whispers when they were spoken of at all.

With social media, this has changed. People post Instagram photos of surgical scars, offer advice on medications over Twitter, and make videos of themselves using medical devices. This sea change in how illness is communicated has profound effects.

Agency: Control over self-representation

Many people who live with chronic illness experience vulnerability over how others perceive them. It can feel dismissive when people say, "But you don't look sick!" as if illness can't be real if it's not visible. On the other hand, it can feel shaming when people comment on visible signs of illness. Social media, which allows a curated portrayal of self, can be empowering as the content creator decides what they want to reveal and what they want to hide (Hill, 2017).

Similarly, many people feel reduced to their illness when, in fact, there are many non-illness-related facets of their personality. They can use social media to portray their other interests and pastimes. Conversely, people who feel that their illness has been unseen can educate and inform others about their experience through illness-related content.

Shame-busting

The abundance of chronic illness social media content pushes back against a longstanding societal belief that illness is unseemly, shameful, and should be hidden (Alu, 2020). Images and text that portray illness in a public space "function as statements confirming that these [illness] experiences should be considered integral parts of the subject's life." This displaces shame at an individual level ("I can show up in public as I am, without hiding this important part of my identity") and a societal level ("Illness is an important part of identity that should not remain secret").

Community building

Chronic illness social media content is designed for engagement. There is an invitation to respond to posts using the reaction buttons (likes and dislikes) and/or comment function. People living with illness can get support during hospitalizations and flareups, using social media to alert people that they are struggling (Stage, 2019). They can educate people on what it means to live with chronic illness, making visible what has previously been unseen.

Responses to social media narratives are not always positive. Sharing can feel vulnerable, with anxiety about whether a post will receive no response from others (silence) or negative responses. People who share their chronic illness on social media may wonder with each post, "How will I be received by those seeing my content?" Some fear they will be seen as attention-seeking, inappropriate, or "too much."

Others fear they will be seen as sanitizing the illness experience, as not being truthful enough. This anxiety is a symptom of the greater social anxiety and confusion around chronic illness. "It is to some extent socially unclear what is 'too much' or 'not enough' in terms of sharing and responding practice, whether [illness] narratives should focus on positivity or be as 'realistic' as possible, and whether they should be shared in private or public settings." (Stage, Klastrup & Hvidtfeldt, 2021).

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Take-away exercise

Using some of the hashtags noted at the beginning of this post, find some social media accounts that contain chronic illness content. Notice your reactions to this content. Are there posts that cause you to feel solidarity and admiration? Are there posts that make you feel irritated and annoyed?

Sit with the feelings that come up and wonder about them. What are you responding to when you enjoy a particular post? What are you reacting against when you dislike specific content? Your feelings will give you information about your attitudes and beliefs regarding chronic illness.

Can you imagine using social media to communicate your own illness experience? If so, what would feel authentic to you?