I started down this path myself and I know how dangerous it can be. Isolation gives power to our pain and our symptoms because they become our focus, and the reason for everything – or should I say the reason for the lack of everything we used to know. The more time we spend alone in our symptoms, the more intense our symptoms seem. When I found myself becoming more and more isolated, and felt my symptoms becoming the focus of my everyday, I decided I needed to make some changes quick.

I needed community. I needed to be around people who understood and did not judge. I needed emotional support. So I sat down at my computer and did some research looking for a local support group. I did not find what I was looking for so I did the next best thing – I created FibroHaven support group. I wasn’t even sure if I had the energy to facilitate such an undertaking, but once I started the ball rolling, there was no looking back. I knew I needed to make it as easy on myself as possible, and fortunately I was already familiar with the great social networking site Meetup:

Meetup is the world’s largest network of local groups. Meetup makes it easy for anyone to organize a local group or find one of the thousands already meeting up face-to-face. More than 2,000 groups get together in local communities each day, each one with the goal of improving themselves or their communities.

Meetup’s mission is to revitalize local community and help people around the world self-organize. Meetup believes that people can change their personal world, or the whole world, by organizing themselves into groups that are powerful enough to make a difference.

I love their mission statement and believe in it wholeheartedly, and that is where I found the energy to form and organize FibroHaven support group on Meetup. I wanted a local community; I wanted to change my personal world and the world of others suffering with Fibromyalgia; I wanted to make a difference.

When they say they make it easy to organize a group they are not kidding. I followed their easy instructions and templets, and created a group website. They guided me the entire way. Then I followed their prompts to promote my group and I waited for members to join. Before I knew it I had several members and was ready to schedule our first meeting.

We began humbly last November in a coffee shop – seven of us sharing our stories, and excited to meet people who just “get it.” There was no need  for pretense or pretending; we had an instant knowledge and understanding of each other through our shared experience of living with Fibromyalgia. I soon found that I was not alone, and that there were many people in my own community who shared my need to combat the isolation of Fibromyalgia. For nine months now we have continued to grow, continued to share, and continued to improve our overall states of wellbeing.

So how does my little support group apply to you, and how can it help you alleviate your isolation? It is simply an example of the options and opportunities out there for all of us. I am not suggesting that we all start our own groups, because for many of you there might already be Fibromyalgia groups in your community. Click on the Meetup link above and check it out. There are over 80 Fibromyalgia, Chronic Fatigue and Chronic Pain Meetup groups across the country.

If there is not one in your community, consider joining a group that appeals to your interests. Do you knit? Are you a book worm? Interested in meditation or yoga? I bet there is a group for most anything you are interested in. Sign up, join, and then commit yourself to attend a function. If you combine something that interests and matters to you with people who have the same interests, you are bound to have a positive experience.

I cannot recommend Meetup enough. In fact recently President Obama commended them on the difference they are making in local communities across the country. I know I could not be a successful organizer without them. I have a new sense of purpose, am less isolated, and more hopeful because of my group. I wish I could invite each and everyone one of you to become a member. But since I can’t, please take a moment and research what kind of groups are available to you. Honor yourself and make the commitment to participate in life.

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.

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