Obviously you need to sign up for an account--which sometimes can be a little complicated. Then you need to figure out how you want to present yourself online. Next you need to figure out how to find people to connect to and how exactly you go about having "comversations" with them.
Creating A Social Media Presence
One of the first decision you face is if you will use your real name or a pseudonym (like many in the chronic illness community do.)
I decided to use my first name on my blog, my blog's Facebook page and on Twitter. With a pretty unique name like Selena, I don't really have to compete with others to use my real name. If you have a more common name, you might find yourself trying to figure out how to make it different from the other Lauries, Marys or Sarahs out there.
I also decided to use a real picture of myself as my avatar. I chose to do this so that people could see the real me in the hopes that this might help them develop a connection to me.
Connecting to Others
I found my chronic illness community by searching keywords like fibromyalgia, chronic illness, chronic pain and chronic fatigue. I've also discovered my peers by searching the nicknames they call themselves, like: spoonies, sick chicks, fibromites, chronically awesome and ChronicBabes.
Once I identified a few people to friend or follow, I looked at their friends/followers lists for ideas about who else I might want to interact with.
Luckily for you, if you want to try Twitter, I can make connecting to others there a little bit easier. I have put all my friends with chronic illness on Twitter into a public list called My Chronic Friends. I think they are a great group of people and encourage you to follow and interact with them too.
Communicating with Others
To be honest, I just sort of dove in, joining groups and then inserting myself into conversations. Using this tactic, I sometimes got positive results and sometimes got mixed results.
In retrospect, I could have spent more time "listening" to conversations to see how they unfolded to get the hang of things.
What threw me off initially was not always getting a response when I put myself out there. I learned over time that not all my attempts at communicating will elicit a response from others. As my social connections grew, I knew others were reading my tweets and posts even if they didn't always respond to them. Somehow knowing this has become a social connection in and of itself.
Here are some of the ways that I connect with others:
- Contributing to a conversation on a Facebook wall or in a Facebook group
- Having a conversation via Facebook messages
- Sharing a link, photo or video with others on Facebook
- Hitting the "Like" button on a Facebook page or status message
- Reading and commenting on a blog posts
- Writing a blog post in support of an awareness day or illness-related event
- Hosting and participating in blog carnivals
- Using Twitter to have any time, anywhere conversation with others
- Participating in Twitter chats, like the weekly #spoonieparty
Through social media I have learned a lot about other people just by reading their tweets, comments, posts, etc. In many respects, my interactions online are very much like having a whole bunch of digital pen pals.
I learn bits and pieces about them with every shared communication. And just like a puzzle, those bits and pieces come together and a fuller picture of each person emerges over time.
The absolute best thing about social media is that people from around the world are always there participating in conversations--all day and all night. So when it is 5 am and I can't sleep because of pain or insomia (or painsomia), I can always find someone on Twitter who is awake and wanting to chat.
I also love how well social media works with my chronic lifestyle. Social media is always there for me whenever I want it or need it to be. So when I have the energy and the time, I can connect to other people simply by tweeting, commenting, chatting and posting.
I hope this post has inspired you to try some new ways of connecting with others through social media. I've also included these links below to some good articles with ideas about how to get started and how others with chronic illness use social media too.
- 10 Golden Rules of Social Media
- 10 Steps to Start on Twitter
- How to get a conversation going on Twitter?
- Social Media Conversation Basics
- 8 Reasons Why Twitter Can Boost Your Happiness
- Does Facebook Boost Happiness — Or Not?
- Getting Low: Helping Others with Chronic Illness
- Social Networks a Lifeline for the Chronically Ill
- Social media brings hope to chronically ill