Living with a chronic disease as complex as ankylosing spondylitis means living with a range of almost-overwhelming feelings: despair, loneliness, anguish, physical and emotional pain. After I was diagnosed I experienced all of these feelings and more. I simply could not comprehend how my life would change from that moment on. I was in a dark place and, many times, I couldn’t see a light at the end of the tunnel. I felt alone and I might have stayed that way if I hadn’t been able to connect with others across Brazil dealing with the same burden as me. I owe these connections, and the hope they brought me, to social networking.
Finding a voice
It wasn’t a completely straightforward journey. In 2006, when I received my diagnosis, there was a significant lack of content on ankylosing spondylitis available on social networks in Brazil; on the internet in general. On top of that, a good part of what was available was difficult to understand and extremely negative – far from ideal for someone looking for support.
Particularly rare were honest accounts from other patients with ankylosing spondylitis. I believed that sharing experiences of pain and how to overcome it could be highly useful so I started writing my own blog, Ankylosing Spondylitis Brazil. The blog was my way of screaming so that the world could hear my voice, a form of self-therapy. When I wrote, I became lighter; I could finally let go of my pain and leave it behind.
“It’s only when we see we are not alone that we find strength to fight for a better world”
Expanding my horizons
Through the blog, I met many, many people from around the world, all living with ankylosing spondylitis and other rheumatic diseases. By talking to them and introducing them to one another, I became part of a huge, mutually-supportive community. This was phenomenal; it gave me back the sensation of usefulness and purpose. Moreover, many of those virtual connections also became face-to-face friendships that I believe will last a lifetime
Every story I heard, every bad day I could support my friends through, every good day I helped them celebrate, every example of overcoming pain, all gave me strength to keep fighting. I took on a new, more positive perspective and soon started using the blog for more than sharing experiences. It became an advocacy tool to demand a better quality of life for the people with ankylosing spondylitis in Brazil.
Blogs and social networks are essential to expressing the difficulties everyone with AS faces every day. They not only help us to understand our limits but also to see the possibilities our lives still hold despite our disease. When a patient with ankylosing spondylitis is part of a network, they not only increase their understanding of their disease, they gain the encouragement to overcome it. It’s only when we see we are not alone that we find strength to fight for a better world.
This article was written by Samuel Oliveira, with help from the resident experts at ThisASLife.com. A social site helping the whole AS community to: Learn. Share. Inspire. Discuss.