Posted on July 17th, 2012 by Admin
Editor's Note: Niki W. is a patient/caregiver who submitted the following essay as part of the Mayo Clinic Center for Social Media Patient, Caregiver Scholarship Contest. To vote, simply use the Facebook "Like" or Twitter "Tweet" buttons at the bottom of each post to share or leave a positive comment. The top vote-getters will be finalists.
Even though I spent years prior to my diagnosis of rheumatoid arthritis trying to find out what was causing my widespread symptoms, I was still floored when my rheumatologist advised me of my condition. Like many other chronic pain or invisible illness patients, I had to come to terms with autoimmune arthritis. A few months after my diagnosis I was feeling alone so I went online in search of support on Facebook and in forums. I found invaluable information and some support but nothing that fit just right with me or my new online friends. On a whim one day we joked that we were the "RA Chicks". I decided to make a Facebook page to share our stories, questions, need for support or sharing of information. Little did I know how much it would change my life.
Even when I am dealing with the worst of flares, my worsening symptoms and my depression I have a purpose to get up each day. I have been constantly inspired and touched by being a part of our members' lives plus including them in mine. No matter how awful we were feeling, our Facebook group became home to us all. Our little group of twenty quickly rose to a hundred, a thousand, and now two years later we have accumulated over 11000 Facebook members around the world. Even though we are named "RA Chicks: Women with Rheumatoid Arthritis" we have grown to encompass members that are male (Roosters) and women (Chicks) with all different forms of autoimmune arthritis whether ankylosing spondylitis, juvenile arthritis, lupus, psoriatic arthritis, rheumatoid arthritis, still's disease or sjogren's syndrome.
Along the way we have added rachicks.com, an information website filled with articles, tips, facts about autoimmune arthritis, blogs from fellow RA Chicks and links to resources for those living with autoimmune arthritis or their caregivers. I have since become a volunteer for IAAM (International Autoimmune Arthritis Movement), an advocate plus volunteer for the Tampa Chapter of the Arthritis Foundation and now a public speaker on their behalf in future functions. This year Wego Health, an online community for health activists and advocates, awarded me Best In Show for Facebook for our online RA Chicks community after being nominated and voted on by our fellow peers. Also, in an up and coming issue of an arthritis health magazine, I will be in an article about online support groups, social media and specificially our group RA Chicks.
It is my goal to help raise awareness not only about our health conditions but also call attention to needs in our community as a whole. I wish that every RA patient can find a group like this in social media where everyone not only understands what he/she is going through but is experiencing some of the same things. It allows an outlet for support, a place to ask questions, share stories or fears, and even share some giggles. There is this beautiful moment when each one of our new members just gets that finally someone truly understands that keeps our online spirit going. I personally have been motivated by how I felt so alone and isolated when I first went looking for support online. In my wildest dreams I would have never expected how big a role it would become in my life. Sure I knew that my medical conditions would change my future path but RA Chicks has truly changed me for the better and I want to keep paying it forward as best as I can.
I would love to have an opportunity to participate in this Social Media Summit as well as represent those in my online community family by discussing or sharing my experiences whether in an informal or formal setting. While I do consider my volunteer work and commitment to my Chicks and Roosters my "job", I do not receive money for what I do but I am paid in love, respect and knowledge. I have been navigating the Social Security Disability claim process as well as receiving county free medical and food assistance for the past two years. Without a scholarship I will be unable to experience this great opportunity.
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