Humans of ME/CFS
I am one of the fortunate ones.
I was knocked down by what I now know was ME in the 1980s, when I was in my 30s. Very little was known about this odd thing that happened to me…I was exhausted beyond anything I had ever experienced, and for no apparent reason. I had a debilitating headache, 24/7 for months on end. My throat was always sore. But the utter exhaustion was the worst. There was no amount of willpower that would allow me to function normally. At its worst, the goal of my day was simply to take a shower.
For roughly four years, this disease dominated my life. I was unable to work for several months, and had several years in which my entire being was focused on resting every possible moment so that I could continue to work and be self-supporting. Friends, hobbies and fun fell away.
Doctors didn’t believe that I was sick. Friends and family did not understand. And I plugged on through it, with no idea when, or if, it would ever end.
It was a difficult and humbling time—realizing that the dreams I had had for my life might not ever come to be—the simple dreams like having children, playing sports, going out to dinner with friends, doing satisfying work. When we’re young, we think we know the troubles that may lie ahead. I would never have anticipated being sick with something that few believed was real, no cures or treatments and which caused people to question my integrity.
I am fortunate that I got better. Slowly. Over the course of many years. I say that I’m 95 percent well now. The truth is that I always have a consciousness of how much energy I have expended and when I will be able to get enough sleep. But these are minor troubles. I dodged a bullet. A significant, awful bullet. And I don’t know why or how I dodged that bullet. My heart breaks for the millions who are not so fortunate and who continue to suffer, day after day.