Connecting With Other Spoonies
Sometimes it can be very lonely being a fibromyalgia sufferer. Sure, you’ve got your friends and family around you but no one really understands what it’s like to have fibromyalgia unless they have it, too.
Today I thought I’d look at ways to connect with other people who share this chronic pain condition.
Social media is a great — and easy — way to connect with people with fibromyalgia. As well as following individuals and support groups, you can also follow hashtags. If you know your way around social media then you might want to skip the next couple of paragraphs and jump straight to the recommendations below, but if you need a walk-through of your hashtags and your hyperlinks then read on.
Hashtags are a way of linking conversations on Twitter, and they’re starting to be used more and more regularly on Facebook. By using the hashtag symbol (#) you can categorize what you’re writing about, which ensures your tweet or status appears when people search for the hashtag.
For example, if I write a blog post and then put the hyperlink on Twitter, I will add the hashtag “#fibromyalgia” which will ensure it appears when people are searching for tweets about fibromyalgia.
If you have a Twitter account, there are a number of relevant hashtags you can search for to find like-minded people who are talking about the same thing you are. Note: don’t include any spaces in your hashtag searches, otherwise they won’t work.
Common hashtags to search for on Twitter include:
These hashtags will take you to conversations the public are having about fibromyalgia, often with links to websites like NewLifeOutlook that can provide you with information or a network of fellow sufferers.
There is a huge number of fibromyalgia-related social media accounts and most people who have a large Facebook following will also have a good Twitter account. It’s often a case of having a read and finding a person or group that you feel represents you and your ‘voice’, but here are some of my favorites to get you started:
- Save a Spoon – @Spoonie_Life
- Fibro Facial Gal – @fibrofacialgal
- Juls – @Justagoodlife
- Fibro Babes – @fibrobabes
I am, of course, assuming that you’re already following the NewLifeOutlook – Fibromyalgia Facebook page and Twitter account and I (obviously!) recommend my own social media pages for a bit of fibro community spirit; see the A Life Less Physical Facebook page and Twitter account.
Next page: support groups, blogs and forums, and being open and honest.