Saturday, May 12, 2012

Six Little Things that Make a Big Difference

I have fibromyalgia, but you’ll probably never hear me talk about it again.

 I’m only talking about it today because it is National Fibromyalgia Awareness Day and I feel a responsibility to all the folks I know with this syndrome who could really use more support, but don’t get it.

 I think one of the reasons why too many fibro sufferers don't get enough support is because it is so hard for people to understand an illness that doesn’t show symptoms laypeople can see. There are no bruises, no scars, there might be some hair loss, but not enough for anyone to notice (thank God).

There’s a lot of misinformation out there, too. Some people still believe fibro is a hypochondriac’s diagnosis, one doctors give to crazy women who go to the doctor so often with mystery symptoms. I thought that myself for a long time. Even those who’ve caught up with the medical community often still have a big gap in what they know vs. what they think they know. After I got diagnosed, two of the earliest people I told said “oh, so really, what that means is the doctor doesn’t know what’s wrong with you.” No.

 So here’s what I wish people knew about fibro:

    1. It’s a real diagnosis. I got my diagnosis from the most respected rheumatologist in my big, big city. There are diagnostic criteria. If someone tells you she (or sometimes he) has fibro, she does.

    2. We fake it all the time. Not the disease, heavens no. We fake being well. For example, I stagger from the house to my car to go pick up my kids from school, then once I get there, I take a deep breath and bound from the car to pick up my kids. I take care to change my walk, so no one can tell that I limp these days. I plaster a smile on my face. I make sure I walk upright, and I take care not to grimace when anyone could see. Then we go home, and the kids often have to help me get out of the car and into the house.

    3. We can’t predict for sure when we’ll hurt. Maybe people who’ve lived with fibro for a long time can. I don’t know. I just know I probably won’t commit to a meeting two weeks in advance, or a big project, because all I can promise you is how I feel today.

    4. We are fighters. I’ve never met or heard of a single person with fibro who wants to lie in bed, or sit on the couch, or not do stuff with their kids. Fibro is a problem of missing out, not of extra ease.

    5. It’s not a death sentence. Nobody dies from fibro. Not only that, a whole lot of us live healthy, active lives full of the things we love. We have to adjust our expectations, and live through a lot of trial and error, but really, isn’t all of life like that?

    6. We don’t want to talk to you about it, but we want you to be informed. Talking about why you feel bad or how you feel bad sucks. Look, support us when we need it. Learn what fibro is about (yes, I know I just said we don’t want to talk to you about it, but we’ll happily answer earnest questions to help you understand better). If you love someone who has it, take your cues from her about when she needs help and when she needs to talk about it. She’ll let you know what she needs, if you just demonstrate you’ll listen without judgment.

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