As the Social Media Intern at The Partnership For Palliative Care, I did not know much about palliative care when I began working here, but I did know something about illness.
In 2008, at the age of 22, I was diagnosed with lupus and rheumatoid arthritis. This was a complete shock and a stunning blow. I had no idea what lupus was and I thought rheumatoid arthritis was something only old people get. I felt completely and utterly alone. While I didn’t even know what a blog was, just a week after my diagnosis, I took to the blogosphere and began sharing my journey with chronic illness. Almost six years later, I am still blogging away at http://gettingclosertomyself.blogspot.com.
From my personal experience, I have seen first hand the amazing things that blogging can do. By starting the Restoring Quality of Life blog, The Partnership for Palliative Care, as an organization, recognizes the importance of the Internet and social media to engage patients,their families and caregivers, and members of the medical profession in promoting the highest quality of care possible.
You might have heard that recently, there has been a lot of attention paid to articles in both The New York Times and The Guardian criticizing Lisa Bonchek Adams, a blogger, for her “excessive” blogging and tweeting about her journey with cancer.
The controversy has caused a variety of discussions on the Internet. But what we find most interesting about it is why people decide to blog and share about their illnesses online.
The Brian Lehrer Show, a radio program on New York’s NPR affiliate, recently did a call-in show in which they talked to several bloggers about why they blog about their illness. The phone lines went crazy.
This emphasizes an important fact: that Lisa is not alone. There are many, many people who blog or use social media to share about their illnesses, including myself. And we do it for many reasons, but one of the chief reasons is precisely so we don’t feel so alone.
Many of us, especially those who are younger, receive shocking diagnoses and have no idea where to turn. No one in our immediate circle is going through anything similar. And that is an extremely isolating place to be. The people that you once found the most comfort with cannot provide you with the solace and companionship that you need.
A blog or social media page provides an outlet, even if at the outset you are sharing into the Internet ether, or mainly to your Mom. Many of us blog as a way to share information, so we don’t have to tell the same story a hundred times. And some of us are simply more articulate in writing, so it makes sense to share that way.
But how one deals with illness and the grief and suffering that often comes with it, is a personal choice. Some people blog. Other people use other outlets. But blogging and social media can be powerful tools for connection and support.
And ultimately, the story that we share is ours and no one else’s.
So the question is:
Why do you blog or share through social media about your illness?
Join us in starting a conversation about this topic through our first blog carnival.
The deadline for submissions is March 3, 2014 at 11:59 p.m. Please submit posts by clicking on the button bellow.
Want to know what the heck a blog carnival is? Find out more here.
A blog carnival is an open call for bloggers from across the blogosphere to submit current links pointing to blog posts on a particular topic. There is so much stuff in the blog-o-sphere, just finding interesting stuff is hard. Blog carnivals make it easy to find blog content on a particular topic by collecting it and sharing it.
At the end of the submission period, the host of a blog carnival typically will decide which submissions to share, and then will share them by providing a summary or analysis of each post.
For this carnival, we will be sharing selected submissions on March 5.
Along with collecting blogs on the subject of why people blog about illness, we want give people who do not blog, but who utilize other social media, the opportunity to share their illness experience, and to have their voices heard. So we are inviting links to blog posts, but also social media posts.
So if you’ve written – or want to write – a blog on the topic of blogging about illness, or you want to share your experience with using other types of social media, you can contribute to the blog carnival by clicking on the button above.