My Fibromyalgia Awareness Journey

The guts to go public with this blog didn't come easy. It required high-doses of Prednisone, to be exact. The year was 2010, and it was an infinitely simpler time in the world of social media. Or so my naivete thought. My Prednisone-high made me so empowered to bring awareness to this horrible illness, it inspired me to rip out my guts and spew them all over the pages of this blog. I figured I'd been through living hell and survived, so maybe my words could help someone. Hindsight is such a bittersweet lover, seeing as I was knee deep in the middle of my second waltz through Hades, but was too fucked up to realize it. 

But, back in the beginning I didn't just pen this blog. In order to get people to read it, I tapped into the fibromyalgia community on Facebook and started promoting my writing. Much to my surprise, not only did people read my blog, but the feedback I got was incredible! Suddenly, my feelings of total estrangement from normal society lessened a little as I started to meet people who understood my experience. Sure the details differed, but we'd all been kicked in the teeth by the impact an unexplained chronic illness has on one's hopes, dreams and the progress of living life. To say it's anything less than a bonding comprehension would be to understate the severity of the suffering.

Sadly, it didn't take long for my new-found joy to go completely awry. Looking back now I can't remember if I got off Prednisone first, or if the cyber-bullying predated my foray into one of the most physically and mentally weak phases of my entire life. All I knew was my world was crashing down around me, all the work I'd done to get my life back from fibromyalgia had been obliterated, down was up, day was night, good was evil, evil was all there was, and the people online were viscous. Mean. Attacking me personally on such raw levels, the woman writing this today can't believe I even took it seriously. But, alas, I did. After that, I nearly lost myself in an abyss so dark, I didn't know such caverns of blight existed.

Like a cloak of impenetrable protection, my ensuing retreat of anger and betrayal exiled me from the online world in nearly every way. The only reason I didn't delete this entire blog and the Facebook support page I started was because my husband physically stopped me from doing so. I felt so exposed and abused, I vowed to never allow the world at large such open access to me ever again. I shoved my sweeping plans for fibromyalgia awareness on the shelf of "not worth my sanity," and channeled all my intentions into writing my fiction book about a girl whose life gets all screwed up when she gets fibro. When I could muster up an intermittent blog, they pretty much covered the same rotation of three safe topics in an endless, tired reprise. Knowing I had to defend every damn word I wrote to my dying breath left me with little to say, and even less of a desire to say it. As I settled into life as a reclusive, anti-social loner, the last of my innocence nearly a decade of sickness hadn't stripped me of yet, truly died.

The funny thing about my life is for a long while the bad just kept coming, and it wasn't over yet. I learned this the day my rock crumbled. Suddenly overnight, I had to find more strength inside my bitter, angry, weak self than I'd ever possessed in my entire existence. Life reached such a basic, fundamental level of sink or swim, I became terrified for my own survival. That fear sharpened my fighting claws into vicious blades of determination. In the ensuing weeks and months, as my impending demise grew increasingly smaller in my rear-view mirror, I finally understood what a survivor I truly am.

While the deep scaring all this trauma slashed into my heart has mostly healed, I can still only engage with social media in very limited doses. It took a lot for me to recognize anyone who does anything on a large scale is opening themselves up to ridicule and hate. As much as I wish I realized it in the beginning, it's a hard-fought lesson I won't have to learn twice. But knowing it's par for the course doesn't make it any easier to absorb. So I'm tender, delicate, and still very guarded in my online dealings. I'm also almost done with that book, and still have every intention of raising tremendous awareness about the horrible disease that gobbled up my life.                       

Thanks for joining,
Leah

#fibromyalgia #fibro #chronicillness #chronicpain #invisibleillness #fibromyaligaawareness  

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