Social media shines a light on long COVID and other invisible illnesses
by Lauren Elizabeth
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I’ll never forget Veteran’s Day weekend 2017. What I thought was a stomach virus left me bedbound for two months and added me to the 6 in 10 adults in the United States who have a chronic disease. As I lay in bed, unable to even sit up, I turned to social media. It was on Instagram where I learned how to advocate for myself and begin pursuing answers. That same Instagram community would eventually inspire me to create my own account and lead to the jumpstart of my career.
The pandemic
Social media has always been a vital resource for chronically ill people, who often refer to themselves as “spoonies.” It became more important than ever when the COVID-19 pandemic began in 2020. The pandemic changed the way we use social media. Three years later, many of the 6.1 percent of U.S. adults who report currently having long COVID have joined the spoonie community through Facebook, Instagram, TikTok, Twitter, and others.
In fact, our understanding of long COVID itself exists thanks to patients sharing their stories on social media. Amy Watson first coined the term “COVID long-hauler” — inspired by a photo of herself in a trucker cap when she was initially infected — in a Facebook post in April 2020. What started as hashtags and accounts evolved into support groups, patient-led organizations, and research studies. Patients taught each other how to advocate for themselves, sharing each other’s stories as “proof” to their medical providers, while researchers used their anecdotes and data as inspiration for further studies.
Ally N. and her roommates caught a mild case of COVID-19 in October 2021. After 10 days, her roommates recovered, but she didn’t. She was eventually diagnosed with postural-orthostatic tachycardia syndrome and deals with other fluctuating symptoms, which she now shares on Instagram.
“Through social media, I’ve been able to connect with so many others with long COVID and join a community of people who are here to support each other,” Ally said. “I’ve found my group of people who pick each other up on bad days, share advice for symptom management and doctor visits, and understand each other better than many family/friends in the real world.”
Fighting isolation
Jamie Wignall
Long before 2020, chronically ill people congregated on social media to find community, share resources, advocate for research and policy change, and raise awareness for our often “invisible” conditions. Social media serves as a platform for people to share their stories and challenge narratives like “But you don’t look sick.”
Natasha Graves started joining Facebook support groups for people with chronic illnesses in 2012, shortly after meeting Lauren Stiles, the founder of Dysautonomia International. Natasha went on to help facilitate the creation of the Dysautonomia International Black Support Group on Facebook, which she now moderates.
“Representation really does matter,” Natasha said. “There are certain things that only other Black people would understand when it comes to the chronic illness journey and I wanted a safe space for myself and others to be able to voice those opinions and help to lessen the isolation of chronic illness.”
Isolation is a common phenomenon for chronically ill people, which has only worsened throughout the pandemic, especially as mask mandates disappear. As of 2012, 3.5 million people in the U.S. were homebound and 54 percent of those people were disabled.
Emma Burns is helping combat that isolation through Spoonies at Work, a virtual co-working group and “water cooler” for chronically ill people who work remotely. She was inspired to start the group after spending much of her career with undiagnosed Behçet's disease.
“I wanted chronically ill and disabled people to have a safe, neutral space to connect and work alongside other spoonies — no matter what work looks like to them,” Emma said. “We're all about swapping advice for making work easier and more fun when you have a health condition to think about, too.”
An opposite effect
Jamie Wignall
Having an “invisible” chronic condition can be just as taxing mentally as it is physically. Up to one third of people with a serious chronic condition experience symptoms of depression.
Although research typically focuses on the negative effects of social media, it can often be the opposite for chronically ill people. A systematic review from 2015 found that 48% of studies indicate social media use is beneficial in chronic disease management.
“Social media provides a place for people with chronic illness to share and read about lived experiences which in turn can support them to feel less alone,” Melanie Foulkes, a disabled and chronically ill counselor, said. “Using social media to advocate and educate others about chronic illness can be an empowering experience for individuals who have reduced social contact due to being housebound or bedbound.”