Disconnected and alone.
That’s how I felt when I first got really ill with CFS, and even moreso during my pregnancy 12 years ago when I developed the added “bonus” of electrosensitivity.
That lost sense of belonging due to CFS is something that can contribute greatly to secondary mental health problems such as depression.
This is where the internet makes the world of difference (pun totally intended! ;-))
The net part of internet is short for network, and this amazing piece of technology allows us to access people from all over the world in order to build a network of supportive people in similar situations to our own.
This International ME / CFS / FM Awareness Day I want to talk about the amazing online CFS / ME / FM community and how to connect with this community.
Connecting With The ME / CFS / FM Community Online
In 1995 when I’d just moved back home to my parents’ due to the increased severity of my CFS, I had no access to the internet – and what I would have given to have it!
Back then I had to travel 1½ hours in the car to get to a monthly support group in order to connect with others with CFS.
Admittedly, at the time I was skeptical about hanging around with other people who I thought would probably just be sitting around whining about their symptoms and feeling sorry for themselves.
Please forgive my judgemental, naive 22 year old self!
It was so good getting to talk with others experiencing the rollercoaster that is CFS / ME, relating to the stigma I faced daily and all the various frustrations of life with an-ill-defined, hard-to-treat invisible chronic illness (ICI).
It takes seconds, not 1½ hours.
And I can do it anytime, not just once a month. Heaven! 🙂
My 5 Fave Ways To Connect With The Online CFS Community
Due to the electrosensitivity I’ve had for 12 years, I probably connect online less than others who don’t get terrible headaches from the computer, but these are the methods I use most.
Twitter has become my #1 platform for connecting with the CFS /ME /Spoonie community (and I learned about the word “Spoonie” via Twitter (then looked up Christine Miserandino’s great article)).
Originally I tried searching for anyone talking about CFS via the search bar, but it’s really been a matter of just getting into the conversation with others I’ve met, checking out their blogs and giving genuine support and feedback to other ME /CFS bloggers, and to anyone else I come across who seems to be like-minded.
One person leads to another person, and the connections just grow.
There’s a certain amount of jargon and etiquette to learn about on Twitter in order to help build relationships, but all you need to do is Google that topic to get up to speed.
It may all seem a bit alien to begin with, and 140 characters is not much, but if you really click with someone you can always exchange email addresses or even talk on Skype – as I do with a few people.
There’s so many ways to use Twitter to connect with the ME / CFS community that I could take up a whole blog on it!
Actually, I DID write a blog exactly a year ago (I had honestly forgotten that when I wrote the previous sentence), which was a ME / CFS / Fibro Twitter List.
It’s desperately out of date now, but it’s a huge list of people who mention CFS / ME /Fibro in their Twitter handle or in their profile.
2. Facebook pages
Certain CFS / ME-based Facebook pages have great communities attached to them.
Sometimes one post can start a whole conversation between the people who comment.
It helps to have Notifications set so that you get an email when someone responds on the same post as you, but maybe you’re better than me at remembering to check FB notifications!
You can now search hashtags on Facebook like you can on Twitter, which is great.
You can also use the search bar to search for good CFS/ME sites.
I’m preparing a similar list of ME / CFS Facebook pages to the one I did for Twitter, so if you have any suggestions for great ME /CFS Facebook pages, with interactive communities, please let me know in the comments section or via my Facebook page or Twitter.
3. Facebook groups
Facebook groups can be quite a bit more interactive and more like a community than Facebook pages, but, like anything, it all depends on how often you participate in the group.
I must admit, at the moment Twitter suits me better than Facebook groups or forums because I don’t have a great deal of time to spend talking online.
I am planning to get more involved in the Facebook groups I’m already a member of, and to find some others to get involved with.
I’m planning a blog post with a list of these as well, so any suggestions would be greatly appreciated.
Cue a very quick crash course in using Instagram!!:-D
But via Instagram, because you can search hashtags, you can connect with anyone who hashtags #MECFS #CFS etc, so it’s another way you can connect to the ME / CFS online community.
Another favourite way I have of connecting with the online CFS community is to read blogs of people living with CFS/ME.
Many of these I find via Twitter or Facebook.
There are some incredible bloggers out there blogging about their life with CFS.
As I’m a lover of good writing, I get truly inspired by many of them. I wrote a blog recently of 5 Top “Living With CFS” Blogs To Read (not including mine!).
When I find a CFS blogger I like, I make sure I share their blogs on Twitter, Facebook or otherwise.
This is my way of saying thanks for contributing positively to my life.
I also try to comment on all blog posts I enjoy because, as a blogger myself, I know how lovely it is to get comments (and it helps Google to find that post – it increases SEO if you know what that means).
And I also seek out my favourite CFS bloggers on Twitter and FB to say hi and connect if possible. Some of them I’ve built up great relationships with over time.
There are so many ways to discover and connect with the CFS / ME / FM communities online.
These are only 5.
I tend to be interested more in discussions, page, groups and blogs about “Living with CFS” day-to-day than those focussed on treatment, research on causes, or those that focus on what the illness should be called.
This is just my personal preference. I think it comes a lot from the stage of the illness that I am at, and the fact that I’ve moved through certain stages where I would have loved to be involved in those other types of blogs, but I’m not there currently.
These days I leave those blogs to others who are passionate about them, and I look for blogs, Facebook pages, and Tweeps (had to use that word once cos it makes me laugh) who focus on managing their CFS / ME with a great attitude.
Today’s Action Step
In the comments section, tell me one Facebook page, Facebook group, Instagram account or CFS / ME / FM blog you recommend to our Guru Crew. Simple action step today hey?
I’d love to hear your feedback too. Tell me what you find most useful in connecting online.
До завтра (Until Tomorrow in Russian)
Keep Smiling 🙂
Day 1: 31 Days To A Better CFS Life – 3 Myths of Acceptance That Hold Us Back
Day 2: 31 Days To A Better CFS Life – It Is As It Is. Choose It!
Day 3: 31 Days To A Better CFS Life – 5 Ways To Control Our Thoughts When In Overwhelm & Despair
Day 4: 31 Days To A Better CFS Life – 6 Things You Can ALWAYS Do Despite CFS / ME
Day 5: 31 Days To A Better CFS Life – 7 Ways To Focus Your Thoughts On Something Uplifting
Day 6: 31 Day To A Better CFS Life – Being Present – 7 Simple Mindfulness Techniques To Help Manage CFS
Day 7: 31 Days To A Better CFS Life – Learning To Ask For Help – 5 Simple Tasks You Can ‘Outsource’ To Help Manage CFS
Day 8: 31 Days To A Better CFS Life – Discover Podcasts – 5 Steps To Finding & Listening To Good Podcasts
Day 9: 31 Days To A Better CFS Life – Listen To Your Body. I Am Today!
Day 10: 31 Days To A Better CFS Life – 10 Ways To Nurture Yourself & Fill Your Bucket
Day 11: 31 Day To A Better CFS Life – 5 Ways To Combat Spoonie Mother Guilt on Mother’s Day!
Day 13: 31 Days To A Better CFS Life – How & Why Audiobooks Are A Great Illness-Management Tool
Day 14: 31 Days To A Better CFS Life -10 Top Audiobooks I Recommend
Day 15: 31 Days To A Better CFS Life: 5 Tips For Getting Tasks Done When You Have CFS / ME
Day 16: 31 Days To A Better CFS Life – What Are You Struggling With Most Right Now?
Day 17: 31 Days To A Better CFS Life: What Are You Doing WELL In Managing CFS / ME / Fibro? What Are You NOT Struggling With?
Day 18: 31 Days To A Better CFS Life – 3 Things I Struggle With At The Moment & How I Manage Them
Day 19: 31 Days To A Better CFS Life – 101 Ways I Manage CFS / ME & Electrosensitivity Pain
Day 20: 31 Days To A Better CFS Life – 5 Benefits Of Writing To Help Manage CFS / ME
Day 21: 31 Days To A Better CFS Life – Gratitude is Healing – 5 Ways To Practise Gratitude
Day 22: 31 Days To A Better CFS Life – A Letter To Partners Of People With CFS / ME
Day 23: 31 Days To A Better CFS Life – 7 Healthy, Safe Ways To Release Emotions
Day 24: 31 Days To A Better CFS Life – Letter To The General Public From Those With CFS / ME / FM – Part 1
Day 25: 31 Days To A Better CFS Life – Letter To The General Public Pt 2 – How You Can Support Someone Who Has CFS / ME / FM