Humans of ME/CFS
I’m one of the lucky ones. My ME/CFS is less severe than it is for many. I’m able to hold down a job, thanks to a very understanding boss who lets me work from home when necessary and alter my schedule and commute as needed. But in 19 years on the job, I have never made it to a social event with my coworkers after hours. I have never made it through an all-day staff retreat or attended conferences or events that required travel. I will never be promoted any higher in spite of my experience, skills and ambition because I don’t have the physical or emotional capacity to take on more responsibility.
I’m lucky that some of my family members understand and are compassionate and that I have a kind and supportive husband. But I’m unable to sustain any friendships outside work and family except with one lovely person who accepts that I may only see her three or four times per year. Even long-distance friends fell off when I couldn’t attend weddings or birthdays or help with their crises.
I’m lucky that I can exercise a little bit, walk a couple of blocks and do a few minutes of stretching and strengthening. And I’m lucky to live in a city full of culture, art and music. But I can’t walk through museums, art galleries, farmers’ markets, or street fairs. I haven’t been out of the house after 10 p.m. for two decades, so I’ve missed all the concerts, celebrations and parties. There’s no shopping sprees with friends or running to the mall.
I’m lucky that I’ve found some wonderful health care providers who understand the disease and believe that I know my body best. But none pretend to have a cure or even optimism that I’ll ever be fully well again. And after years of doctors who told me I was crazy or depressed, I live with the constant anxiety that this one doctor who will work with me might leave my HMO or move out of town.
I’m lucky that many people have asked questions, listened and tried to understand what ME/CFS is all about. But there are those who think I’m lazy or a hypochondriac, a whiner, a loser. They don’t say it outright. They say: “Yeah, I’m tired too, but I still manage;” “How are we supposed to do anything when you can’t be out for more than an hour?” “You should try meditation/chamomile/a glass of wine/yoga/a gluten-free diet” “Why do you have a disability placard when you’re not disabled?” I remember every comment no matter how hard I try to let it go.
I’m lucky that sometimes I can sleep, and I feel almost normal. But other times, weeks go by with such bad sleep that my brain turns to mush, and I become less and less able to do the little things I could do just weeks before. And the roller coaster never stops.