Humans of ME/CFS

Our stories are strikingly similar: my life was STOLEN from me during my personal and professional prime. I could not have imagined it and remain steadfastly incredulous to this day.

My symptoms first began in 2003 and by 2010 (when I was misdiagnosed with MS) I was forced to sell my beloved cheese and specialty food shop. The long journey to a diagnosis was fraught with the usual suspects: disbelieving doctors, unsympathetic friends, and even some hurtful behavior on the part of family members. Though I lived in a large city with “world-class healthcare,” it wasn’t until 2015, after traveling four times to other renowned healthcare institutions, that I finally received a diagnosis of ME/CFS.

It was quite a shocker — ME/CFS was never even on my radar. It was unthinkable that I was now living with it. But even harder to wrap my head around, now that I know more, is the fact that there are MILLIONS of us the world knows nothing about — even though our numbers well exceed those living with better known diseases such as Multiple Sclerosis!

As of 2013, when my symptoms progressed to a more acute place, I have become mostly housebound. But I’ve learned a few things! I’m glad I didn’t marry any of the first dozen candidates (whew). And, it’s wise to marry an introvert in such cases as this, as my husband is perfectly content hanging out with me at home (go nerds!). I thank gosh for him — we are thick as thieves and funny as heck despite everything this disease has put us through. At least we like to think so.

But, despite my blessings, the reality is that I’m just trying to get through each day. It’s hard to believe I can be as sick as I am and still be alive.