The Origin Story of Fibrogirl


Officially I’ve been at this game for four years, my fibro reality though, like so many others goes back years.

My first memory of super “this is not right at all” pain goes back to when I was 16, ten full years before my official diagnosis. I live in jealousy of those who get theirs quicker. 

But my origin story involves orchestras, and a day long workshop before the one and only performance that year of State District Orchestra, Band, and Choir.

The night before my right hand and wrist had started hurting. Which if you know stringed instruments isn’t good, that’s the bow hand, and bowing is all small and medium fine hand and wrist movements. I tried to limit my use that evening as my sisters and I prepped for the paper route but looking back, I knew even then I wasn’t dumb. I was worried about the next day and how I would hold up since my body was betraying me.

Next day only a few hours into the rehearsal, the only full rehearsal with the guest director, and things went bad fast. I was saved from my stubborn pride ( which was insisting everything was totally fines and I could play pain free) by my regular stand partner seated one stand behind me with a clear view of my face, and my younger sister in the bass section directly behind us awesome viola people, and also with a clear view of by face. They knew my facial expressions, they knew I was lying through my teeth when I said I was “fine” and they were the ones who got our regular director during a break and explained that something was wrong. And pushed back at my “I’m fine” because I was working that concept as best I could then, I’m better at it now.

I didn’t play the rest of the rehearsal, just did the fingerings on my instrument as it sat on my lap. That night I l only played one song, the one with the easiest bowings.

My director was the first to suggest it might be just “growing pains” to me and my parents, but hey he did also suggest we see my doctor.

Thus began a 10 year odyssey of pain, being ignored, taking at times the absolute max of over the counter painkillers, all for little to no relief. Until finally, the Rheumatologist in the first 5 minutes of meeting me and examining me gave me the diagnosis I knew at that point had to be coming. The one Neurologist #2 had suggested off hand and dismissed in one fell swoop 2 years earlier. ( point of order kids go to the Rheumatologist not the Neurologist # 1,#2 or #3, Rheumatologist knows more in this case.)

That’s my origin story. How I became a Fibrogirl. I’m not the only one out there. The more we speak up, the more we all showcase what makes us, us, the survivors and spookiest of chronic and invisible illness the more the world will see us.