If I asked you what your biggest challenge has been since developing Fibromyagia would you say the isolation? For many people the answer would be “yes.” Isolation is a very real issue for people living with Fibromyalgia and chronic illness. Many of us have had to change careers or quit working altogether. We limit our socialization because it is too painful or we are too tired to participate. And eventually we find that our social circles have moved on, or they cannot relate to the unpredictable and debilitating nature of our illness. Fibromyalgia is an elusive illness and easily misunderstood. It is no wonder many of us chose to suffer silently rather than burden others with our symptoms.
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.