On a recent post, Conversation on Isolation, I promised I would put together a list of online resources for Fibromyalgia and chronic illness support and information. Below you will find many – but not nearly all – links to social networking online resources. Because I am not an active participant of each site listed I am only making comments on the sites I have firsthand knowledge of. Please feel free to add to this list in the comments, or leave your thoughts, feelings, experiences on any of the listed sites. Due to the amount of information available, I am breaking this information up into two or three posts. The next post(s) will include info on forums, blogs, newsletters and general resources.
Social Networking Sites
Twitter – The day I wrote Conversation on Isolation I hopped onto twitter and posted the following comment: “Twitter is a great way to combat the isolation of Fibromyalgia and chronic illness. Bravo to everyone who makes the choice to reach out.” Of the 258 comments I have written on twitter, this one received the most responses and re-tweets (reposting of my comment by fellow tweeters to help spread the message). Twitter is a great way to connect with other people living with Fibromyalgia and chronic illness. Last week I left a brief tweet that I was not feeling well enough to participate on twitter, and I received many well wishes and encouraging responses. It moved me deeply. I highly recommend giving twitter a try. Here are a few tips.
1. When you create your profile keep in mind the kind of people you want to connect with. If you have Fibromyalgia, are a passionate reader, love to knit, and are living a gluten free lifestyle, include all of that in your profile and it will help others with similar interests find you.
2. Upload a photo into your profile. It doesn’t have to be a photo of you. It can be a photo of an eggplant if you want. Go crazy. Be original. People are more likely to follow you if you have an image in your profile, and once you get active and start tweeting they will immediately identify you by your photo.
3. Make your tweets meaningful to your intentions. If you sign up and start tweeting about the tacos you made for dinner, that may not interest any of your followers, but if you include info on a great gluten free taco seasoning you used, then you are sharing meaningful and interesting information that will likely start a conversation.
4. Search other tweeters to follow with similar interests by using twitter search and keywords – ex: Fibromyalgia, #Fibromyalgia. The hashtag (#) placed before a word helps to organize the published updates which in turn helps with your search.
5. Join a Twibe. For every area of interest, there is a twitter group to join, and if not – start your own! I belong to twibes for Fibromyalgia, gluten free, bloggers, and writers. It is another great way to find people to follow and start making connections.
6. There are many, many twitter applications out there to help you. I have no specific recommendations, but if you decide to join twitter just do a quick google search to help find them. How is that for vaguely helpful!
7. Follow Fibrohaven on Twitter! Come on now. You know I am a lot of fun and I sometimes even have something useful to say!
Facebook – Most of us know facebook is a great way to reconnect with old friends, and to stay in touch with family members, but there are also many groups and causes on facebook to join.
I belong to Fibromyalgia Awareness. It is a global group with 12,877 members and over a thousand discussion topics. You can always find a conversation going on and I have met several women who I now call friends from this group. If Fibromyalgia Awareness is not a good fit for you, there are several other groups you can join like I Will Not Let Fibromyalgia Run My Life, or Fibromyalgia Sucks.
There are also several blogs you can follow on facebook including Fibromyalgia Haven. Each blog has its own page and message board so you can dialog with the blog’s author and other followers. It is a great way to create small intimate communities.
And if you just want to get away from Fibromyalgia for awhile and connect with people that love In-N-Out burger as much as you, there is a group for that too! In addition to Fibromyalgia Aware, I belong to a writers group and a group for fans of my favorite author (T.C. Boyle) just to name a few. Facebook is worth joining just to explore all of the possibilities.
Meetup – Meetup is a great resource to find events and groups in your own community. Their motto is Do something • Learn something • Share something • Change something. Everyday someone is creating a new group on topics from Fibromyalgia and CFS, to book clubs and clubs for beagle owners, groups for personal growth and the law of attraction. You name it, there is probably a group for it.
Meetup is the site I use to organize my support group. For a small annual fee we have a wonderfully organized website with a message board and calendar to list our events. So even members who are never physically at a meeting can contribute and participate. I am also regularly being contacted by other meetup organizers and members looking to participate in a meeting or sponsor an event. Meetup is an excellent resource. Currently there are 78 Fibromyalgia meetup groups worldwide – 57 Chronic Fatigue, 75 Chronic Pain & 52 Chronic Illness. Maybe there is a group close to you!
Myspace – I am not active on myspace, but I did a simple search that came back with nearly 10,000 pages related to Fibromyalgia.
So you see, there are a lot of options just within these four examples. The best way to research them is to go ahead and create a personal profile so you have access. There is no risk or cost to you, and if it turns out not to be the environment for you, you can easily delete your profile. If social networking is not for you, maybe an online forum will be. Check back tomorrow for my post on the multitude of forums out there.
I’m glad we are all working together to support each other in our journey with fibromyalgia. Its very interesting that out blog titles are so similar, mine is Laugh ♫ Live ✈ Love ♡ Smile ☋. Sometimes I think on bad days we only have the energy for just a few words of inspiration.
Great list! Also remember that many online communities that are for a primary purpose, such as ravelry for knitters, have subgroups. I find some of the best support online in a couple of ravelry groups Fibro Froggers and Fog Knitters. It is refreshing to come together with a group of people who have at least one thing in common other than their illness. I tend to stay away from the obvious places on line such as large Fibromyalgia organizations because they can tend towards an illness identity culture, but gathering online with an interest that connects you in other ways is very uplifting.
Your work is appreciated. Thank you so much for searching out and sharing these resources.