What the Migraine Community Means to Me

In 2009, I reluctantly joined Facebook. I had no idea how it would change my life and the lives of so many I had never met. In fact, it was a life saver.

Looking for a Migraine Community

I was diagnosed with chronic migraine in 2003 and started searching for information on a number of online message boards. I couldn’t find exactly what I was looking for. At that time, I was working on my second degree black belt in Kempo martial arts and wasn’t as debilitated as some.

By 2009, chronic migraine had completely taken over my life and I spent most of my days in isolation. I found the darkest, quietest room in the house, our laundry room. I called it my cave. Not able to do much, I turned to Facebook, seeking others who were also desperately looking for relief and new treatments. I found people like Dorothy did on her road to Oz, all looking for a new brain or some elusive cure that didn’t exist.

I formed a small Facebook chat group. We banded together under a purple and red striped ribbon. That chat group turned into the nonprofit Chronic Migraine Awareness, Inc. in 2012. We’ve grown to more than 50,000 members/followers from around the world! This wouldn’t have been possible without a strong social media presence linking those with chronic migraine to each other, making it clear they are not alone.

Bridging the Gap

New research indicates there are 60 million people living with migraine disease and approximately 10% of those are chronic. As the numbers grow in our migraine community, support continues to play a significant role in coping with chronic illness. Sadly, many in the migraine community do not have access to a good support network. This is where social media can bridge that gap.

I’ve found being involved on social media has helped me cope and prepare for our current pandemic. In fact, the isolation that one feels while living with chronic migraine has, in essence, prepared us for it. We’re used to missing birthdays, graduations and other important family events, losing relationships and not seeing friends. For many in our community, not much has changed. We’ve already learned to work remotely, stay inside all day and talk to people virtually.

I can honestly say social media saved my life! It helped me find my purpose in a community where I know I’m not alone — and rally for chronic migraine. We can rally on social media from the confines of our bed, couch or recliner even in the midst of an attack. Every graphic, meme or story shared on social media and in our community empowers us.

If you’re not part of an online community and would like to be, please see our public page at Chronic Migraine Awareness, Inc. >>

migraine community



Written by:
Catherine Charrette-Dykes
Chronic Migraine Awareness, Inc.

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