At 58 years old I rarely find I can be called ‘new’ at anything, but yet I find myself in that position when it comes to Social Media and Health Care advocacy. This is an area I am a mere novice at, but find that I get great satisfaction when I connect with others and can make a difference for them and me.
Perhaps it comes from my early work as a journalist and my love to write. I’ve always wanted to share the who, what, when, where, why and how of the story. That dovetails with my personal need to understand the medical situations I find myself and my family experiencing. I want to know more. I want to know why is this happening? And I definitely need to know how learning about your situation and mine can make our experiences better.
I cut my teeth on internet information sharing and the sensibilities of a medically inspired community at Inspire.com after I had a heart attack in 2008. My cardiac event was unexplainable to the medical experts and that wasn’t an acceptable answer to me. Not only did I want answers, I needed them, and I turned to the internet looking for other women who shared my experiences.
A few months later in the same year I was diagnosed with Multiple Sclerosis. The support network that got me through my search for heart answers had given me the foundation to search out another community that could assist with my MS needs. I landed at MedHelp.org and soon after they offered me a position as one of the volunteer community leaders for the Multiple Sclerosis forum, a role I still enjoy today.
MedHelp.org and Inspire.com both have areas for members to journal their experiences, which I did extensively at both sites. Then a few years later, I began blogging here at InsideMyStory.com about cardiac health and multiple sclerosis – two health conditions I have personal experience with, dabbling at it when I had time and the motivation to write. I tend to write in spurts and then set it aside for longer periods of time.
Blogging inspired me to check other communication methods using Social Media to connect with like- minded others who also have stories and experiences to share. I am on Facebook – I started there only to keep in touch with friends but that experience expanded to include several MS groups as well. I joined LinkedIn and am in several networks, one of them an MS related group started by the Myelin Repair Foundation. There’s also a Pinterest account sitting neglected, because I don’t allow myself the luxury of time to get lost in all those boards from other people. Talk about turning on my creative juices- I’m concerned it would only encourage me to start new projects that I don’t have time to complete. I have always been a great starter – it is the finishing that seems to trip me up.
I was late to Twitter and my account is less than a year old. I love to get lost in reading tweets and following links and find it is probably the one SoMe I could turn into a full-time job if only I didn’t already have one. However, most of the time I am just reading and every so often passing on what I just read, I must admit I still don’t have the protocol of Twitter down and when I retweet, more times than not, I forget to note RT or MT. I haven’t a clue what any of those other initials commonly used stand for.
Then along comes this new Social Media enticement from the creators of www.migraine.com – MultipleSclerosis.net and their Facebook group and web site. It was flattering when they reached out and asked if I wanted to be a part of their MS group, and I am now one of the regular contributors to their blog as well as a moderator in their growing online presence. It is exciting to be involved with a new venture and have my writing viewed by people other than my family and friends. I won’t lie – when I saw thousands of people had seen my blog on MS, Annette Funicello & Death, it was exciting to know that my thoughts are being read by so many people with MS and maybe I am giving comfort through education.
I find I now have my own dilemma going on with the who, what, when, where, why and how – there’s not enough time to do all the things I am lured do in Social Media, something has to give and I am having trouble picking what that might be. Obviously I can’t give up my day job, since there is a paycheck and health insurance attached to it. The Social Media world has so much to offer – now if only I could find a few more hours in the day to participate in the many forms available