Wednesday, November 17, 2010

For the Love of Migraine

As a part of the Love Beats Hate Blogging Event I am coming out of blogging retirement to share about the power of love as I have experienced it through supportive communities online. 

Walking through a chronic illness such as Migraine disease can be a dark journey and very isolating. When the initial rush of support dies down, and the urgency of friends and family members to be present physically/emotionally dies away, it can be a very silent place. Sometimes there are voices of judgment because one has not made any improvement. Sometimes there are voices of relentless questioning and unwanted advice. Sometimes the voices are simply absent.The judgment, questioning, advice and silence are enough to stifle the fight and hope inside of a person with that chronic illness.


Countless mediums exist on the internet full of information and support. In November 2007, a little over two years after my Migraines had become disabling, I stumbled across My Migraine Connection (MMC).  The darkness of my disease was quite oppressive and my thirst for knowledge was large. I took the leap of faith and posted on MMC's forum. I felt quite vulnerable putting my story out there, but I was immediately drawn into the pool of love and support that these members had to offer. Their kindness, insightful suggestions and encouragement kept bringing me back until I was daily hanging out on the forum, becoming a part of the community.  Why wouldn't I want to be in a place where I was surrounded by people who knew my story, understood it and loved me through the journey? This community re-ignited the fire within me to fight for myself and not give up on hope for better management of my disease.

Hoopsky, Dragondrool, nutmegan, LauraP, historianrja, Nancy, Teri, kiwiE-J, URI.Kate, Peggy, Heather, Meli, Jamie, Cindy, DebMomm, Alaura, Katinthecorner, jennyc, gwp (Gretchen in Mississipi), nutcracker, cyn, Mel Z, Lawyerlee, justgrateful, Eileen, Leloo, lisa ebk, Tonya, MaxJerz (and the list goes on) were people that helped me survive the war of everything that goes into living day in and day out with constant severe pain.  We were a family of fighters and survivors who would fight for each other with extreme love and compassion. I had not seen many of their faces (until some of us connected on facebook) and certainly did not know many of their real names, but it did not matter. 

A few of these friendships have extended into a sisterhood of women who I would count as closer to myself than most of the people I know in person. These are women who were there for me when most all of my other friends stepped back.
 

When The Oprah Winfrey Show was featuring Skype on many of its broadcasts, I would dream of a show where our forum members would all be interviewed by Oprah via Skype. Skype being perfect for us Migraineurs who often times are confined to our homes and certainly wouldn't all feel well enough to travel to Harpo Studios in Chicago. She'd interview us because we were an example of women loving and supporting each other in a way that made such a difference in each other's lives.  Don't we all sometimes have this self-centered view that Oprah would be interested in us for a show?  Of course every Migraineuer's dream would be that the rest of the show would focus on ADHA (Alliance for Headache Advocacy) with Teri Robert and the top Migraine/Headache specialists discussing Migraine treatment and the need for more research. But, I digress.

The love of my forum family got me through some very rough patches: endless hospitalizations, countless medication trials and complicated emotions including despair about my prognosis.

I would never wish Migraine disease on anyone, but if I had never had it, I would never have gotten to know so many truly incredibly loving and caring people. Some of these women will be friends and sisters for life.