It was nearing midnight on a cold day in January 2016, and I was desperately scrolling through the internet to learn about spondyloarthritis. It was six months after my diagnosis of Crohn’s disease, and earlier that day, I received a second diagnosis of spondyloarthritis. I had no idea that someone in their 20s could get arthritis. I naively thought: “Wasn’t that for old people?” So I took to Google to learn more — and what happened next changed everything.
I stumbled upon CreakyJoints and began to see that young people did in fact live with arthritis. I was enamored from the pages and pages of others like me sharing their story. Within minutes, I had 15 plus tabs open, hungry to read about others who also lived with arthritis. Then, I saw the social media accounts of the people sharing stories through CreakyJoints. (You can follow CreakyJoints on social media — Facebook, Instagram, Twitter, Tik Tok, YouTube — to connect with other patients who are seeking community for living with arthritis and other chronic illness.)
As I kept reading, the pain and anxiety of a new diagnosis began to dissipate. I realized there were others out there who were struggling like me, and most importantly, there were others out there who were still able to participate meaningfully in their daily lives despite living in chronic pain.
The reason why I’m reflecting on this night now, nearly six years later, is because a recent article in the Daily Mail just claimed that people with chronic illness share their story for attention and likes. The author writes that teenage girls are posting videos of themselves crying on social media as part of a movement to get a diagnosis that they want, and this causes people to act more sick than they are. The article questions the integrity of people living with chronic illness, saying that the spoonie community encourages others to lie to doctors and adopt a victim mentality.
As I read this article, tears welled up in my eyes. I thought about what my life would be like if I didn’t learn from other patients about how they care for their chronic illness. My healthy lifestyle wouldn’t be the same. I probably wouldn’t be an active participant in my care. I would struggle to recognize and describe my symptoms to my doctor and to explain to friends and family about what I go through. I learned so much of this from the chronic illness online community.
Why Social Media Helps: What Patients Say
Social media is far from perfect, and despite being designed to bring people closer, it can lead to loneliness and anxiety. There’s also a lot of misinformation and disagreements that seem to erupt online. But these platforms can (and do) help people with chronic illness find community, support, and tools to feel less afraid and more empowered to live better.
To help shed light on how social media helps the chronic illness community, I asked other patients to weigh in on how these platforms have helped with their health and wellbeing. “Navigating a chronic illness can be quite scary and exhausting, so finding support from the chronic illness community means everything. Sharing online also helps show the reality of what living with a chronic illness is like to those who have never experienced it from family and friends all the way up to legislators,” says my colleague Sarah Shaw (@chronicmigrainegirl), BIPOC Patient Advocate, Community Outreach Manager at GHLF. When I first started opening up about what it was really like living with migraine and sharing my story on the Taking Head Pain podcast, a lot of people I knew reached out on social media saying that they had no clue that I was struggling so much and thanked me for sharing my experience because now they can be more mindful to others struggling.”
Here are a few more patient insights:
Social media helps save energy
“It takes less spoons to make one post than carry on multiple conversations. Making a social media post about it can reduce spoons and invite those who are free to talk or show support to me to do so.” — @chroniceileen
Social media helps end ableism
“I share my story to bring awareness about invisible disabilities and help end ableism. When you’re healthy, you never assume that one day everything that you are currently taking for granted could get ripped away from your finger tips — but in the snap of a finger, your whole life could look different. Anyone can become disabled or chronically ill at any point in their life, which is why it’s so important to speak up about life with chronic illness and bring awareness to different disabilities.” — @the.healing.spoonie
Social media gets me through the rough days
“Once I started bringing awareness online, I met hundreds now thousands of people with different chronic illnesses. These connections are what changed my life. It gets me through the rough days. Like right now I’m sitting in the emergency room waiting to be seen, and I know that I have my online community sitting right here with me talking me through it. I show the good and bad moments of dealing with a chronic illness. It’s not easy, and I’m not going to pretend it’s easy. I don’t post those raw moments online for likes. I post it to make others feel less alone. We live this 24/7 and it’s exhausting. It hurts me to see that there are people out there attacking us.” — @anotherdaywithra
Social media helps normalize chronic illness
“Let me remind you what 2005 was like for someone living with a chronic illness. There were no #Spoonie hashtags or tongue-in-cheek TikToks. Before the age of blogs dedicated to everything arthritis, Facebook support groups, arthritis influencers, and other avenues of connection that are so readily accessible to us now, I knew nobody going through the same experience I was. Now more than 15 years later… it was surprising and refreshing to find a community of people who was willing to be so candid with the rest of the world about what they were going through.” — @risingabovera
Social media creates community
“So you can find others that experience the same pain. We create a community here, an aggregate, if you will, a consciousness of kind, and a safe space where we can talk about how we’ve been dismissed and ignored, or what things have helped alleviate our pain too.” — @isntJen
Social media helps people learn about our illness
“Mostly to help other people by sharing what I’ve learned so they know they aren’t alone and can relate. It helps me to let it out. I learn from others how to better help myself by reading about what they go through.” — @dividivigirl
Social media helps navigate a new normal
“I share my personal stories on lupus, aneurysms, and strokes to help others who are in the challenging time of getting properly diagnosed, or those who are newly diagnosed and unsure of how to navigate their new normal. I liken lupus and chronic illness to water often, as it will seep into every area of one’s life. Not everyone will understand, in fact some of your closest friends and family won’t understand, but the good news is you have a community of millions across the globe who are willing to share their story and tangible tips with you, and will walk alongside you in this new path.” — @lupuschickofficial
What the Research Says
When you search the term “social media” on the American College of Rheumatology’s research page, 24 pages of content comes up, dating back to 2012. Each year, rheumatology health professional from around the world gather to share best clinical practices and cutting-edge research as part of the American College of Rheumatology’s annual meeting. I pulled my favorite studies of this peer-reviewed research, here’s what I learned:
- Social media helps with feeling isolated: 94.7 percent of parents reported “helps me feel less alone with my child’s rheumatic condition” when asked about the benefits of online interactions.
- Social media helps spread positivity: “Positive” was the most common emotion computed from tweets on World Lupus Day in 2019.
- Social media can bring together patients and providers: In a survey of patients with rheumatic disease, 96 percent said they were willing to communicate with their doctors through social media and 75 percent desired to be friends with their rheumatologist on Facebook.
- Social media provides much-needed peer support: A group of researchers assessing online support groups for patients with rheumatoid arthritis concluded “Social media based groups may provide an alternative means of facilitating education and peer support that is so often lacking in traditional models of care.”
- Social media fills a need to connect with others: When rheumatic and musculoskeletal disease patients were asked about the advantages of using social media for health-related reasons, 90 percent reported “to hear the experience of other people with the same or similar conditions.”
Become a Patient Advocate
One of the best ways to help people understand the challenges of living with a chronic illness is to raise your voice by becoming a patient advocate.
The 50-State Network is the grassroots advocacy arm of the Global Healthy Living Foundation, comprised of patients with chronic illness who are trained as health care activists to raise awareness, share their stories, and proactively connect with local, state, and federal health policy stakeholders. Learn more here.
Join Our Monthly #CreakyChats
Our monthly, patient-driven Twitter discussion, #CreakyChats, explores topics that are important to the chronic disease community. During a one-hour moderated chat, we provide a space for people to discuss pressing issues facing the arthritis/chronic disease community. You don’t need to be a Twitter pro to join.
During #CreakyChats we encourage everyone to share their strengths, challenges, and experiences — that is how we can help and support people as they navigate life with chronic disease.
des Bordes JKA, et al. Experiences and Perceptions of Patients with Rheumatoid Arthritis Participating in an Online Support Group: The Use of Social Media [abstract]. Arthritis Rheumatology. 2017. https://acrabstracts.org/abstract/experiences-and-perceptions-of-patients-with-rheumatoid-arthritis-participating-in-an-online-support-group-the-use-of-social-media/.
Hausmann J, et al. Health-related Social Media Use by Parents of Children with Rheumatic Diseases [abstract]. Arthritis Rheumatology. 2019. https://acrabstracts.org/abstract/health-related-social-media-use-by-parents-of-children-with-rheumatic-diseases/.
Pirri S, et al. The #Worldlupusday 2019 Across Twitter: An Explorative Analysis of Spreading Concepts and Sentiment Perceptions on Social Media [abstract]. Arthritis Rheumatology. 2019. https://acrabstracts.org/abstract/the-worldlupusday-2019-across-twitter-an-explorative-analysis-of-spreading-concepts-and-sentiment-perceptions-on-social-media/.
Studenic P, et al. Social Media Use for Health-Related Purposes By People with Rheumatic and Musculoskeletal Diseases – Results of a Global Survey [abstract]. Arthritis Rheumatology. 2018. https://acrabstracts.org/abstract/social-media-use-for-health-related-purposes-by-people-with-rheumatic-and-musculoskeletal-diseases-results-of-a-global-survey/.