Strangers online are helping each other manage his or her chronic illness and the results are magical. While Dr. Google and the World Wide Web cannot cure you, it can make things a lot more bearable and less daunting. Having a chronic health problem is isolating and terrifying. It can require things like changes to your diet, lifestyle changes, daily medications, specialized equipment and so forth.
I know how terrifying it all is because it happened to me.
In January 2013 I was diagnosed with a rare condition known as Sphincter of Oddi Dysfunction. Suddenly, I found myself in a lot pain and vomiting all the time. More than that, I had to make decisions regarding risky and invasive procedures and medications. I was 24, my world had completely changed and I was terrified.
Luckily, I had access to the World Wide Web and so did numerous other people with Sphincter of Oddi Dysfunction. On a whim when researching my diagnosis I found a Facebook group dedicated to my illness and suddenly, I was not as scared as I once was.
I had Internet friends and we shared everything from what doctors are the best, to tips and tricks to cope in the ER, to what medications work best and which ones cause more problems. This connection let me take back my life. I regained my control through compassion, understanding, and a lot of learning. I made friends with the group members and even invited one who shared the same specialist as me out to coffee.
Although I met people in real life it was amazing to have a private place to discuss my illness in an upfront and welcoming manner. Suddenly, you just don’t feel so alone anymore. Suddenly you have access to talk to people with your illness and you regain your sense of self by having a built in support network that knows exactly what you are dealing with.
Having a rare disorder is frightening but when you’re able to share the journey with people who understand it is like magic.
I am very happy to have Danielle Faith return as a guest blogger! This one is close to all of our hearts, for sure!
Thank you Danielle and thank you to all of you who follow us here at LIVING a fibroLIFE!
~Meshea Crysup, Founder fibroLIFE
Danielle Faith is a chronic pain warrior with a degree from the University of California, Los Angeles in Cultural Geography. Danielle specializes in new media marketing and self-improvement. She has a knack for clarity and over ten years worth of blogging experience. She is currently working on her passion project, xofaith.com, which is aimed at bringing those with chronic pain together in a peer to peer supportive environment. For additional reading she has a post dedicated to DBT Self Help right here.