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How I Describe Fibromyalgia to People Who Have Never Felt It

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Have you ever wanted to feel what it’s like to have fibromyalgia? No? Heh, me neither. But I’ve gotten to know the ins and outs of it very well (certainly better than I ever wanted to) and should be able to acquaint you with enough of my experiences that you’ll have a better understanding of anyone in your life who may have a chronic illness, pain, or other health struggle. So take a deep cleansing breath and get ready to try something new. A journey through my eyes, if you will.

Remember the last really bad sunburn you had — the kind that makes you aware of every inch of your skin? It itched all over, felt tight and hot. Let yourself feel it now — imagine having that tight sensitivity and flinching awareness to every touch spread to every part of your skin. Now you can all feel the seams in your clothes and you’re even hyper-aware of where your fingers touch each other and the folds of your skin at your elbows and knees. The collar of your shirt is tight and the waist of your pants is uncomfortable, claustrophobic.

But touch isn’t the only sense that’s heightened. Sounds are starting to get louder than seem absolutely necessary, and often unpleasant. When you go driving, lights may seem too bright, and sometimes glare unexpectedly. You have to drive a lot more carefully at night — the headlights suddenly seem like they’re out to get you sometimes. Smells are too strong, and scents that once were pleasant, or foods that you found yummy or just indifferent, may now be vile and sometimes completely out of the blue, they’re just nauseating.

Have you ever had the flu? That nasty seasonal kind that makes you so sore all over that even after taking four Motrin you can still feel your whole skeleton? If you have it’s a helpful reference. If not, be glad and keep getting your flu shot! Imagine waking up with that achy heavy feeling one day, only it’s alarmingly worse than usual. You groan to yourself, think, “Well, that flu shot didn’t work,” and sigh, expecting it to go away after a week or so like it did the last time. Only after two weeks, three, you start to worry. And then, it gets worse.

It starts to make your limbs heavy, tired. Similar to the feeling of walking in sand, you may forget some days that you don’t have the energy you used to and overdo things, only to pay the energy debt for two or three days in bed. On these days, and some random days for no foreseeable reason at all other than fate’s cruel sense of humor, you may wake up with only the energy it takes to get out of bed, get dressed, and eat.

The sidekick of chronic fatigue and pain is something called “brain fog,” which sounds silly. It’s not. It can make you feel foolish and embarrassed, and try to hide it and laugh it off as nothing. But your keys may end up in the freezer, the milk might go in the cupboard, and you may find yourself in some random room in your house staring at the wall and asking yourself, “What was I going to do now?” four times a day. Shopping is a joke, even if it is a lot more… whimsical now. You touch all of the fabrics of the clothes to see if they’re soft enough, and tell your spouse, “Oooh, feel this towel!” Don’t worry, they’ll get used to it. My husband has to remind me of what I was looking for whenever I get distracted by those blasted beckoning sale stickers, or pretty towels… Target is a dangerous place.

But believe it or not all of this – every last bit of it — pales in comparison to the pain. It will become your very best friend, your constant new companion. Some days it’s tolerable, and only makes everything a little bit brighter and the corners of your eyes a little tighter. It makes your temper quick, but you’ve got a pretty good handle on things (just don’t ask your husband what he thinks). Other days, well… those days we don’t like thinking about so much. Some of them will be spent looking for distractions, like books and movies. You likely know the movie theaters with the comfortable seats, because the ones that are uncomfortable are the ones you can’t go to anymore. On the other of these days, the bad ones, you might just pretend you don’t exist.

I know I’ve painted a pretty grim picture here, and one that you may or may not believe is exaggerated. Whether you do or not probably has a lot to do with whether you have had experience with chronic pain or someone who does. But I’m going to tell you something else that you may believe or not, and that’s that I’m grateful for my fibro. It’s taught me more about myself and life than anything else I’ve ever experienced.

I never knew how soft my Yorkie’s fur was before, or how lovely the smell of rain would be after smog. I wasn’t able to appreciate as well the music of the rainfall on the roof when I shut my eyes after a long day. There is balance to be found in the pain, for me, when I look for it.

Originally published: March 4, 2017
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