Thoughts on 20 Years of Illness

It was December 31, 1996 -- 20 years ago today -- that I fell suddenly ill with what was later diagnosed as myalgic encephalomyelitis. I've been sick for nearly half my life now. While I used to spend this day in sad reflection over time lost, I'm instead attempting to see it as a day to honor all that I, along with the millions of others suffering with this illness, have overcome. We have faced more than most people will in a lifetime: the loss of our health, careers, social life, independence, relationships, hobbies, ambitions, hopes, dreams and the ability to fully participate in all our many passions or even in the simple activities of daily living. We have withstood the doubts of others and the stigma of an illness poorly understood and marginalized for decades; one that has few answers and no accepted treatments to ease our many debilitating symptoms. We have suffered with bodies that don't function properly, and that sometimes reduce us to spending days (and for some, years) in darkened rooms where we can do little but focus on one breath as it follows another. And yet, we endure. We have learned, despite such pain, suffering and loss, to still find joy, love and the will to carry on. Without question, none of us would have ever chosen this path for ourselves. But it was the path given to us, and we each battle it with more dignity and strength than we probably ever realized we had within us. And that is certainly something to honor and commend. So, I choose this day, and everyday, to stand proud in all that each of us has overcome, and to continue to defy this illness with as much spirit, hope and grace as possible. Wishing everyone a brighter, healthier, hopeful 2017. May it be a year filled with promising research that finally provides clear answers, treatments and renewed hope for each and every one of us.

Originally posted on Facebook here.