RA affects one percent of the population. Without actively searching, you’d be lucky to run into another person who lives with the same chronic illness you do. Yet, finding someone who knows exactly what you’re going through is on the top of all our wish lists. When I was growing up, the only place I met other kids with JRA was in hospitals and doctors’ offices. Even now, I’ve only met a handful of people who have RA in the part of my life that takes place face-to-face.
Enter the Internet. It has had a revolutionary impact on our ability to connect, person to person and community to community, creating a larger tapestry of people living with RA and other autoimmune diseases.
The Personal Touch
People connect in groups on Facebook, LinkedIn and Google+. On Twitter, searching for the hashtags #rheum, #spoonie and #autoimmune will show you all sorts of conversations about RA, chronic illness and autoimmune diseases. The possibilities are almost endless, but one thing remains the same. People from all over the US and different corners of the world are now in touch with each other. Individuals living with RA have become part of a greater community, connecting to others who know exactly what they mean when they talk about flares, pain and the frustration of limits. Strangers have become friends - Lauren Kosinski views social media as “a giant conversation - it’s like writing mini letters to my best friends.”.
Within social media, people find shoulders lean on and resources for advice. RA Guy says “I’m still amazed that I can post a comment on Facebook/Twitter about being in the midst of a major flare, and immediately receive an outpouring of encouraging responses and support.” He continues, “I’ve found a lot of peace of mind in knowing that a true support network exists, that we can ALL tap into when necessary.” Karen Ager, author of Enemy Within, says “I was diagnosed with RA 30 years ago. I was just a teenager. I felt so isolated. Social media has been very effective in connecting me with others in the RA community because you can reach out and ask for help from a network of people, or conversely you can reach out and help others.”
Helping others is very much part of why the people who make up the RA community share their own experiences. “I put a lot of myself out there,” says Lauren Kosinski, “because sharing my experience can potentially be useful for someone else” Christine Schwab, author of Take Me Home from the Oscars likes social media “because it can make a difference, especially for anyone fighting a chronic disease or going through a tough emotional time … because I am in remission, I can look back and offer advice.” She uses social media constantly throughout the day, finding it a “very effective” tool to connect with others in the community.
Using Social Media to Create Change
Individual contacts are joining together, creating a wider community and organizing that community to create a force for change. Kelly Young, Founder of the Rheumatoid Patient Foundation (RPF) says that the Foundation “was created after a groundswell of requests from patients who had mostly found our community via Facebook or Twitter.” Social media continued to play an integral part of establishing the RPF. “I met all of our board members initially via social media, even though I live near almost all of them,” says Kell. “In the future, the RPF will usecontinue to help patients make connections, encourage one another, and pass along good information.”
The International Autoimmune Arthritis Movement (IAAM) also relies heavily on social media. Tiffany Westrich , CEO and cofounder of IAAM, describes it as a “networked non-profit” organization. Staff and volunteers “work virtually, from home, using social networking (primarily Facebook) to communicate.” Their goals include creating a global network and to raise awareness, including coordinated campaigns to correct misperceptions in the media. IAAM also uses Twitter for shorter bursts of communication related to specific events. They are about to launch their annual fundraising auction, scheduled to run from November 25, 12 AM through November 30, 2011 (sign up here to participate). Donations of “unique holiday gift items” have been made by individuals and corporations and proceeds will be used to fund the work of the organization. Every year part of the proceeds are donated to another organization - this year, the Spondylitis Association of America.
Social media is changing the experience of living with RA and other types of autoimmune diseases. In the past, we went through it alone, each finding our own way to go through life with a chronic illness. Now the Internet has enabled us to find resources with the click of a mouse button, making it easier to be informed, empowered and in control of our medical care. And just as important, social media has created an online community of people who support and encourage each other. RA Guy sums it up like this: “[we] establish and maintain connections which are beneficial to everyone involved. Social media is not about what I’m doing…it’s about what we are doing”
Lene is the author of the award-winning blog The Seated View.
Lene Andersen is the Community Leader for HealthCentral’s RA Community. Lene (pronounced Lena) is an award-winning writer, health and disability advocate, and photographer living in Toronto. She’s written several books, including Your Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain, and 7 Facets: A Meditation on Pain, as well as the award-winning blog, The Seated View. Follow Lene on Twitter @TheSeatedView and on Facebook. Watch her story on HealthCentral.