I’ve never written a nasty email to a person in my life. That is, until now. As soon as Shabbos was over, I logged on to find an email from the National Fibromyalgia Association alerting me to a terrible Associated Press article on fibromyalgia. The article calls fibromyalgia, a “murky” ailment and then goes on in a totally slanted article to liken all fibromyalgia sufferers, pill-popping crazies.
Here’s the little email I sent the AP:
I never thought I’d say this about another human being but Matthew Perrone is an a–. Can you say slanted reporting? Can you say what the hell is a Business Writer doing writing about a “murky” ailment?
Can he come over to my house and spend a week with me and come to all my doctors so he we can talk about how murky it is? Perhaps, he could run himself over with a car repeatedly and then he might feel something like what I feel every day on a constant basis.
I am so disgusted. Can you tell?
Obviously, I am still having trouble controlling my temper. I hope G-d will forgive me for calling one of his works an a–. Luckily, the National Fibromyalgia Association is more rational. They wrote up a great response that you can read on their website: “FM Community Responds to AP Article”
I can’t tell you how often I have to explain fibromyalgia to my friends. It doesn’t matter how much I do it, most of them still don’t understand. One of my friends thinks it’s cute to call me a hypochondriac and then apologize profusely after I scream at him. And every single time someone spots an ad for Lyrica or Cymbalta, they get all excited and email me about it as if they’ve discovered the cure. Even people who know nothing about it like to sit me down and tell me about all the miracle cures I should try: everything from energy healing to hard drugs to herbal therapy.
This is life as a sick person. It’s a world healthy people are too often quick to misunderstand. Ever since becoming incurably disabled, I have really opened my eyes to how the well world treats those of us who are chronically, even momentarily, unwell. Unfortunately, those of us with invisible (but never silent) disabilities are at the bottom of the food chain for sure.