Humans of ME/CFS
“I have chronic fatigue syndrome.” Those are the five most horrifying words I’ve ever said.
Tragically, those five words define me. I’m the shadowy figure suffering alone in the quiet house down the street. I’m a ghost groaning in the night.
I prefer to imagine that folks remember me for who I was. Nobody understands what’s become of me. Though I have been sick for over a decade, I wasn’t diagnosed until 2011. Before I ever said those five words, I had lost myself to a bewildering and debilitating illness - CFS.
Nobody refers to me as “computer programmer,” “systems analyst,” “resident guru,” “genius,” or “keeper of the magic” anymore. Nobody seeks my advice or help. Nobody shakes my hand at recognition ceremonies. Nobody respects the fellow who worked his way up from temporary file clerk. Nobody admires the hard-working family man who returned to school to finish his associate degree, earning an A or A+ in every course. Nobody stops by my desk to ask what’s wrong. Nobody whispers about how bad I look. Nobody complains to management that their “superstar” has taken over 200 hours of paid sick time per year, for five years running.
Why would they? That me no longer exists.
After years of recovering and relapsing in turns, “The Crash of August 2010” completely wiped me out. I could no longer drag myself to work by sheer will. Spending three to five days in bed no longer lent me the strength to carry on. Intractable dizziness, agony, imbalance, brain fog, crushing fatigue and their ruthless accomplices became my full-time occupation. Drag myself to work? Some days I have to crawl to the bathroom and scoot down the stairs to reach the refrigerator. Then it’s no surprise that my condition also brought major depression and generalized anxiety.
Only my immediate family witnesses the worst of the suffering. If I see anyone else, it means I’m having a good day, good hour, or good minute. It’s no wonder that I don’t look sick to those who once called me “friend” or “coworker.” They can only catch a glimpse of me during my best moments. None of them has ever visited my bedside.
Why should they? Their old friend no longer exists.
But what does CFS feel like?
It feels like I always have the flu, only much worse. It feels like the world is always moving, and I can’t find my bearings. It feels like I’m going to fall down.
It feels like the pain will never end. It feels like I’ve let down everyone who needed me. It feels like I’m a terrible burden on my family. It feels like my own personal hell.
It feels like I can’t think. It feels like I’ve lost my mind. It feels like I’ve lost the life I worked so hard to build. It feels like I’m dying. It feels like I’m never coming back. It feels like I’m a ghost.