I know I missed Myalgic Encephalomyelitis (ME) and Chronic Fatigue Syndrome (CFS) week (May 12-17) but I wanted to post this now.
I was just visiting their Blue Ribbon Campaign for ME/CFS website and came across a ME/CFS Memorial. This particular page moved me to tears. There are memorial’s left of women, many of whom were in their 20’s and 30’s, who have taken their own lives to escape the horrid pain ME/CFS caused them. So many of these women (and some men) have left behind children, some even small children. Being a mother of small children myself, and someone who suffers from chronic illness and has experienced the stigma of doctor’s not taking me seriously or under medicating me, to read what these women endured and then left behind… to imagine, just briefly, the agony these women must have felt, broke my heart.
I’ve seen the tweets. I’ve even RT’d them. But to be honest, I hadn’t given it too much thought. It’s chronic fatigue syndrome, I thought. You sleep a lot. Right? I saw the Golden Girl’s episode where Bea Arthur trotted all over Florida looking for a doctor to believe that she was sick (one told her she was having a mid-life crisis and to dye her hair!), then she finally flew to New York and was diagnosed with CFS. But even then, (and this is back in the late 80’s early 90’s) her symptoms were no more than sore throat, headache, achiness, and being exhausted. Other than the fact that she was turning down some jobs, she didn’t seem like her world was going to end. I’m not downplaying the illness, I just never realized it was that bad. Unlike Lupus or MS, or cancer, I’ve never known someone with ME/CFS that I’ve been able to touch or see, to examine, so that I can know what the disease really does to a person. And we all know television is never accurate with these things.
But reading through that memorial section, that made it hit home. A light bulb went off like in those old cartoons and I realized this disease is as devastating as cancer, as MS, as Lupus. It doesn’t just deserve my retweets, it deserves a blog post. It deserve more awareness, because like endometriosis ME/CFS is a silent illness that doctors ignore and tells you that you don’t need medicine for. Like endometriosis, it’s a disease that is underestimated. And I’m sure, like endometriosis, it’s a disease that no one cannot relate to unless they too have it.
But the best I can do is write this post and give it another voice out in the blogosphere… out on the Internet… and in the world.