Chronically fatigued but still awake.
My legs are twitching and burning. My torso is going numb. I’m changing positions after what seems like every 30 seconds.
If I’m going to be awake, in pain and single-handedly winning the try-outs for the Annoying Olympics, then I may as well do it in the company of others.
There is only one thing left to do: Pick up my iPad and engage with my midnight friends!
This is something I have really only come to appreciate over the last 15 months since I started blogging.
In the blogging and business world, you are told that social media is everything – after content creation – and you’ve got to be all over it.
Being ‘all over it’ opened up my eyes to just how beneficial online interaction can be on a personal level.
All of us, regardless of age, background or economic status, have a need to feel connected.
Social interactions are an integral part of life and take on prime importance when people are faced with challenges.
Think about how isolated people can be when restricted by things like illness or disability.
I got sick in the November of 2005.
We were still on dial-up internet connection at home.
I literally had to be plugged into the wall with my laptop at my father’s desk in the study to get a connection. And I should point out that the study was located in my parents’ bedroom. #SocialBuzzKill101
The network was slow, mobile phone functionality was limited (remember the iPhone craze didn’t start until 2007) and it never even occurred to me that I might be able to connect with people in an online capacity.
Facebook launched in February 2004 but I was what you would term a ‘slow adopter’ and didn’t join up until several years later.
The most ‘online’ I went in the early years was a basic Google search on ‘Guillain-Barre Support Groups,’ which directed me to a single organisation and an email address.
If I were to type ‘Guillain-Barre Support Groups,’ into Google right now, it will give me page after page of results.
For some people, particularly those with rare diseases or debilitating conditions, online networking may be the only way they have to find others with a shared experience.
It is bridging the gap between a journey of loneliness and one that is filled with laughter, hope and support.
I’m fortunate enough to have a loving husband, family and a great circle of friends, but I still find it incredibly comforting to connect online with other people and be able to say “That’s exactly how I feel! You really get it!”
Their illness or combination may not be the same as yours or mine, but their direct experience means they have the ability to be empathetic, encouraging and supportive in a way that only those who “get chronic illness really get it,” can truly provide.
There is a bit of strategy involved here.
It’s similar to how you would approach online networking for your business or blog, just a little less structured.
Here’s six tips for you to consider:
ONE – Google Search.
It is widely known/accepted/understood that Google is your biggest friend in the online world.
You ask, Google answers.
TWO – Hashtags (#).
No longer just your phone’s pound sign, hashtags have become a prominent part of our tech culture.
Hashtags help you to find related content for a specific topic (e.g. #ChronicIllness), connecting you with other social media users based on a common theme or interest.
For example, I’m still a bit slow when it comes to Twitter – I don’t really get it – but I’ve established that the best way to find people in my community is through a hashtag search.
I could search ‘#Spoonie’ or #”GuillainBarre’ and then use the results to click-through to the profiles of the people posting content under those categories. And away you go!
THREE – Work out your communication groove.
When we use social media for business, the primary questions we are always told to ask ourselves are, “Where is your audience actually spending time? What social media outlets are they on?”
These are still valid questions to consider when using social media for personal use, but it’s not as dominant a force as in the business world.
Yes, you want to know where your peeps, your tribe, are hanging out so you can connect with them, but the platform(s) you choose should be reflective of you and what you enjoy doing.
I say work out how you like to communicate with people and how you like people to communicate with you, aka your communication groove, and start from there.
Do you like to express yourself through pictures? Then a platform like Instagram might be your ideal stomping ground. My friend Carly Findlay wrote a great post here on how to use Instagram to build a strong chronic illness community.
Perhaps you feel more comfortable interacting in a relatively private community, in which case a closed Facebook group might be more up your alley.
Do you thrive on instant news and a faster pace? It might be time for you to tweet it up.
Do what works best for you and the rest will start to fall into place.
FOUR – Connect with the bloggers that you follow.
Leave a comment. Send an email. Reach out and comment on people’s stuff that you like on social media – it might be a picture on Instagram, an article on Facebook.
I’ve done this and been on the receiving end of it and it’s opened the doors to some really genuine friendships.
FIVE – A-S-K.
So you’ve joined one group on social media and connected with a few people. But you still feel like something is missing.
Not sure where else to turn?
Ask! Put the feelers out there. That’s what these groups are designed to do; help you!
I see post updates all the time on Facebook that say things like, “Can anyone help me with xx…I’m looking for yy..”
Then you can use the recommendations to connect with an even wider audience.
SIX – Tap into the readily available online resources.
Here are a couple of well-known online resources for the chronically ill that I have personally found useful:
Your turn! Are you using the power of the online world and social media to get chronically connected? Does it help? Comment below!
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Photo Credit: Pixabay
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