I was introduced to the term “ePatient” by Stanford School of Medicine’s MedX program. Among many other things, they hold a yearly conference in September that brings together physicians, scientists, researchers, students, patients, and more. The conference is a leading showcase of technology and healthcare with emerging techniques and findings. In relation, an ePatient is a patient who is an advocate for their own healthcare and the healthcare of others through emerging technology, specifically social media and blogging. This year, I’m attending MedX and am so looking forward to the connections to be made and the education to be had.
Though learning of the term ePatient has put a name to it, I feel as if I have been living this for many years now. It’s easy for me to use social media and blogging as a personal outlet and way to make connections for many reasons, but a large one being that I work in social media and healthcare. My personal and professional lives are blurred together.
Additionally, when I was diagnosed with my chronic diseases I went straight to social media. I searched hashtags on Twitter; I searched support groups and disease awareness organizations on Facebook; I searched for medical and health system blogs; and I searched for education and facts from reputable sources. That being said, social media has been a catalyst in my care, my knowledge, and my advocacy efforts. At the very least, it has made me feel surrounded by individuals that are battling the same hurdles that I am, even when offline I’m surrounded by zero individuals who can relate.
To me, being an ePatient means putting myself out there. Making a name for myself in the chronic diseases world means that I am raising awareness for not just myself, but for all of us. I also wholeheartedly believe in being 100% transparent. You’ll never see me showing you my life at face value. I give you the good, bad, sad, and ugly. Transparency is something I can offer to benefit myself and others. If you have chronic diseases and are active online, you would know that we see each other as a family. Everyone is open, supportive, and understanding. We’re often referred to as a #SpoonieFamily. (If you don’t know what a Spoonie is, I urge you to read The Spoon Theory).
This blog is one of my many efforts as an ePatient to support and advocate for chronic disease fighters. I also have a Facebook page you can follow: Chronically Kristin. Coming in the new few weeks (I hope), I’ll be starting a tweet chat, and I will also have a weekly video or podcast series.
What would you like to hear me talk about??
I’d love to know!
I can’t wait to use my experience and my illnesses for the greater good. I want to be able to help others. I might not be able to make myself better, or cure these terrible diseases, but if I can reach out and make someone else feel like they aren’t alone, then that’s a successful ePatient.
In other news, this coming Friday I am headed to Mary Free Bed Rehabilitation Hospital (here in Grand Rapids, MI) for a Fibromyalgia Pain Program. I was referred by my rheumatologist when asking about other treatment options. Although I have some specific treatment ideas I would like to talk over with him (I’ll do a separate post on this), I think this program will help or maybe kickstart me feeling better. The program is 10 weeks long and involves physician visits, psychology, physical therapy, massage, biofeedback, and occupational therapy. The program does not use medication, which is a huge plus for me because I don’t like to take pain medication unless absolutely necessary to function.
Stay tuned, I’ll do another post about the program after my evaluation on Friday.
Category: Chronic IllnessTags: advocacy, autoimmune disease, awareness, blogger, chronic, chronic diseases, chronic illness, epatient, Facebook, fibromyalgia, grand rapids, life, mary free bed, medx, motivation, pain, pain program, patient, patient advocate, podcast, Q&A, questions, rheumatologist, sick, social media, Spoonie, spooniefamily, strength, The Spoon Theory, tweet chat