Social Media is responsible for me writing this post. First, I saw a post on Facebook by ZocDoc, which I “Like” because a friend of high school who lives in NYC uses their services and “Liked” them one day, and being in the healthcare profession I wanted to learn more about the company, I liked what I read, especially their service philosophy. So I read this post from ZocDoc about Social Media and Health, and how bloggers can submit their writings on the topics. Hmm, I knew how much I utilized Social Media in my healthcare advocacy to help others and myself, but had I actually written a blog post on the topic of Social Media? No, but I knew I could, so I added it to my “to do” list.

Then the next day I saw my new Twitter friend, Rhiann, Tweet about Social Media and Health, and it happens to be a Blog Carnival writing prompt. Awesome! Now, I met her during a Twitter #HAChat hosted by WegoHealth.

Leslie at ‘Getting Closer to Myself‘ is hosting the ‘Patients for a Moment Blog Carnival’, and has given the following prompt.

1. Describe your illness in 140 characters.

Perfect it’s a Tweet! And to my delight, my normal Lipedema description fit into 140 characters.

 

Lipedema: Abnormal accumulation of subcutaneous tissue; primarily in hips, thighs, legs & upper arms. Does not respond to diet & exercise.

2. How has social media impacted your illness experience? 

I was diagnosed with Lymphedema in 2001, and Lipedema in 2004, before Facebook, Twitter and even “Social Media” were the current means of communication on the internet. At the time I was diagnosed I connected with other lymph patients via Yahoo groups and message boards. I have also been very active on weight loss surgery forums, such as ObesityHelp. I have gained a wealth of knowledge, and many friends via the Internet. The internet has always been a means of support for me. I lived in a small town in Ohio, so the internet provided a means to reach out to people beyond my geographically limits. I then moved to Miami, FL, and the internet provided a way to meet new friends in my area and get healthcare recommendations.

In addition to getting support and information from the Internet, I have also given back. I started this blog to share my story and promote awareness of my conditions, Lipedema and Lymphedema. I also am advocating for two pieces of  legislation currently in Congress.  I was please to find a whole new world of Lipedema patients on Facebook. Until this year I knew only one other Lipedema patient. While I have been maintaining my illness, I had lost hope there was any other new developments in the treatment options or interest from the mainstream medical field. Through the new connections I made via Social Media I learned that in fact there are new options. And I met others LIKE ME, and NEAR ME! And there are plans for a small gathering this October, so we can meet and share our experiences in person.

I began promoting my blog by sharing posts on Twitter. It was there I found WegoHealth and began participating in #HAChat. And I realized there is a way to connect with other chronic illness patients, despite our conditions being different in disease, our daily lives share a common experience..typically themed in getting the best and most appropriate medical care for ourselves. Social Media has opened up an entire new world of support, and knowledge.

The entire experience has given me a renewed sense of empowerment. I am a healthcare advocate, my goal is help others. Social Media is helping me reach that goal.