Date: Saturday, November 12, 2022
Session Title: Patient Perspectives Poster
Session Type: Poster Session A
Session Time: 1:00PM-3:00PM
Background/Purpose: Living with different autoimmune rheumatic diseases, we (Cheryl and Zoe) share similar struggles with disease management, and successes in learning new ways to use social media to support others and to cope ourselves in our disease journey. Cheryl was diagnosed with rheumatoid arthritis in 2003 at age 20. Today she is on her fourth biologic medication along with methotrexate and enjoys a good quality of life despite moderate to severe RA. Zoe was diagnosed with Crohn’s disease in 2015 at the age of 20, followed by diagnosis of spondyloarthropathy in early 2016. Zoe would try and fail on multiple treatments before finding the right combination of medications.
Intervention: After finding education and support on our own, we realized the importance of creating space and sharing our journey with others. We each use social media as a platform to share evidence-based information, heartfelt support and practical tips for coping with chronic illnesses. We became connected to each other through social media because of the popularity of our accounts, and we now collaborate on posts. While our initial focus has been on providing education via social media, we quickly discovered that the comments section of our posts were full of helpful information as well. We realized that while we initially looked to social media to share our tips, it’s become a place for us to learn others’ tools and strategies as well, many of which we have implemented in our own lives (see Table).
Maintenance: The knowledge we’ve gained from others has helped us improve our quality of life and have more informed conversations with our care team. The improvements to quality of life fall into three main categories: practical tips for daily living, emotional support, and general disease management. We maintain our social media presence through daily content sharing. Cheryl shares regular updates from her Arthritis Life Podcast which features interviews with others living with rheumatic disease, and Zoe shares daily CreakyJoints articles filled with education, support and firsthand stories from people living with rheumatic disease. After posting, we engage with the comments on the content and direct messages from other accounts which is where we learn more from others on their experiences. Cheryl also shares frequently on her Arthritis Life TikTok and Global Health Living Foundation TikTok accounts and benefits from hearing others’ feedback about her life hacks (see Figure).
Quality of Life: Social media gives us 24/7 access to the chronic illness community and their lived expertise. Having this connection with others, sharing our ideas and in turn hearing about others’ experiences has changed the way we approach our health. For Cheryl, she has tried new techniques and gadgets to make daily living with rheumatoid arthritis easier. She has also felt less alone and more open to addressing the ways her condition has affected her mental health, through seeing others open up and share their coping tools and emotional journeys. For Zoe, social media has helped normalize her symptoms. Zoe feels empowered to advocate for herself and speak up at doctor’s appointments and is able to better manage her conditions because of the social media community.
To cite this abstract in AMA style:Crow C, Rothblatt Z. From Practical Tips to Heartfelt Encouragement: How Social Media Can Improve Quality of Life with Rheumatic Disease [abstract]. Arthritis Rheumatol. 2022; 74 (suppl 9). https://acrabstracts.org/abstract/from-practical-tips-to-heartfelt-encouragement-how-social-media-can-improve-quality-of-life-with-rheumatic-disease/. Accessed May 27, 2023.
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