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.
Memoirs of a Jewminicana 
I enjoy reading your blog. Coincidentally, only a few minutes ago I wrote a blog post (www.drsavta.com) that is related to what you wrote– about how people like to make sense of the universe and feel safe by trying to find reasons why people suffer. One of the mechanisms they employ is to deny there is an illness if it’s not readily visible. When my husband was in the US Army where we had Army health care, we used to say that unless the bone was protruding from the flesh, the doctors were not impressed.Rona Michelson DSWModi’in, Israel
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Ignorant articles about fibromyalgia always frustrate me, but even more so when they are run by respected outlet. Last year, this article ran on the front page of the New York Times. It was awful. I'd just been diagnosed, and this was the only thing my relatives had read about the condition.http://www.nytimes.com/2008/01/14/health/14pain.html?_r=1&scp=1&sq=is%20disease%20real&st=cseCan you count the bad assumptions? Fibromyalgia isn't even a disease. It's a syndrome, which means something very different.
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When Eli had his feeding tube people would come up to me and tell me all of their crack-pot cures that they were just sure would make him eat again. So annoying. So I can definitely relate to that.It’s one thing to accept that the general public doesn’t understand what you are going through, but to have to confront it in print from the establishment is just awful. I’m sorry. Sending you an e-hug
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I don’t think I’m going to let any bones protrude from my body but I surely think it would help my friends see me as disabled. Thanks for the e-hug! Margaret, I also worry about the general public reading these articles and mistreating sufferers. Can you imagine how many more people will hear “It’s all in your head!”
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Aliza, this might sound strange, but have you considered carrying a cane? I need some sometimes because my body requires it to walk, but I need it at other times for different reasons.As much as I dislike it, a cane sends a message about disability that simply walking around being in pain does not.I always take my cane when traveling. It means that nobody glares at me when I sit in handicapped seats on buses. I also always take it when visiting family I don’t see often. It makes them treat me like an invalid, instead of a nutcase.I know it sounds dishonest, but to me, it makes my external appearance match my internal reality so that the rest of the world sees me as I am.
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Margaret, a book I read on fibromyalgia makes exactly that suggestion. If you have a cheap, light cane suggestion, send me an email!
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I bought mine at a CVS. It’s adjustable. At some point, I’m going to spend the money to buy another one, because this one doesn’t adjust short enough. (I’m 5’3″). I think this one cost me $10-15. Any large pharmacy or a medical supply store should have a selection. Alternatively, you can buy online.This is the main store where you can buy them online. They have every variant you can think of.http://www.fashionablecanes.com/I do suggest that you get what’s called a derby handle over a traditional one. Traditional handles are those ones that are just a hook on top. They’re mostly used by older people, and generally not recommended by doctors. So if you’re new to canes, I’d buy a Derby handle and get used to using it. Derby handles canes look like this, though there’s lots to choose from.http://www.fashionablecanes.com/5016.htmlBe careful, though, about buying a cane which has grips for your fingers under the handle. I’ve found they’re mostly designed to fit men’s hands, and because I have very thin fingers, the grip doesn’t fit me right and is very uncomfortable. That’s part of why I want to replace my cane.Finally, you may find that the impact of the cane hitting the ground is hard on your hands. Mine have ended up bruised and swollen from it. To alleviate this, you want gloves that have padding on the palm and fingers. These are hard to find, but rifle stores sell them. Google “shooting gloves” to find more. I have these.http://www.denverdiscountmart.com/APPAREL/GLOVES/17490.html
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I always dread when the paper runs articles on migraine because I wind up with half a dozen e-mails or phone calls with love ones who now think they are experts on my condition, not realizing the inaccuracies of those pieces nine times out of 10. I get very tired of explaining that migraines are not headaches, that diet will not cure me, that there is no quick fix, etc. it’s a challenge to walk through world with an invisible disability or invisible condition that causes horrible chronic pain.I know you mean, Aliza, about it being all in your head, since I’ve heard that more times than I can count (though my case it provides fodder for bad jokes).
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Margaret, thank you!!! RudyV, hang in there, girl. We’re in the same boat.
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Aliza: When the pain is bad enough that I need people to give me space, give me a seat on the bus, etc – I carry a cane. I don’t use it when I don’t need it for walking, but it’s tempting because it’s way easier to get people to be more considerate. Having a visible disability is SO different from a visible one. I have a collapsible cane that I got at a drug store – it folds up so that I can put in my bag when I don’t need it. I use it at school a lot because I have to walk up hills (even from the disabled parking spots!) to get to class. People might think it’s weird that some days I walk like I’m fine and some days I’m limping with a cane, but that’s their problem – It makes it pretty clear I have some kind of pain/health issue and easier to get accommodations at school. The only reason I’d discourage people from using one is that they can do a lot of damage to your back and wrists because you often lean to one side. Weird as this sounds, if you are ever gonna use a cane you gotta get someone to show you how to adjust it right and what side to carry it on, because it’s not as intuitive as you might think and you can end up hurting more at the end of the day. When my back is bad I have to avoid the cane at all costs.
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