Why visibility is important during Fibromyalgia Awareness Month

Graphic used with permission from callahanwriter.com

May is Fibromyalgia Awareness Month, or so the Internet informs me. May 12 was Fibromyalgia Awareness Day, but today will have to do. As one of the five million Americans affected with fibro, or about 2 percent of the population, according to the National Institute of Health, I think it’s important to take a second to talk about visibility. To talk about awareness. It took me awhile to start talking about it, but now more than ever, it’s important. Here’s why.

When I worked as a public relations “special assistant,” our office’s receptionist was a sassy woman named Cheryl. Cheryl effusively welcomed everyone from customers to lawyers to politicians to our little corner of Old County Hall, answered phones, redirected questions and kept up a steady stream of banter with whoever cared to listen, all day long. One of her signature phrases was, “I ain’t gonna claim it!” Her theory went, if she didn’t “claim” the adversity du jour, it couldn’t bring her down. As a recent college grad with more than a little leftover teenage angst and a bloated sense of white suburban entitlement, I didn’t think I’d ever need her slogan. Didn’t think there’d ever be anything I needed to cast off that didn’t already come from within. Ignorance is bliss, but it’s also dangerous.

Almost a decade later, I’ve long since discovered its utility. I repeated it to myself when demanding bosses leveled criticism I didn’t earn, when factors outside my control yanked opportunities outside my reach, when plans didn’t work out, dates didn’t go well. And most of all, I refused to claim it when my nerves decided to start their own emo band and give Jamison Parker a run for his money in the sensitivity department.

Fibromyalgia is characterized by, well, just about everything. It’s different for everyone and beyond a number of “pressure points,” presents a dearth of diagnostic criteria. Chronic fatigue. Widespread nerve pain. Skin sensitivity. Sleep disturbance, or difficulty waking. Muscle weakness or twitching. Digestion problems. Anxiety. Depression. Migraines. Dizziness. Vertigo. Insomnia. Brain fog. Fibromyalgia is all of these and more, depending on the patient, the day, or the hour.

I didn’t want to claim my dizzy spells, or the persistent feeling that my feet were further away from my head than they used to be. I didn’t want to claim nagging pain in my wrists and hands (problematic, for someone who types all day), or the way my toes went numb when it dipped below 65 degrees. I didn’t want to claim the feeling that I was constantly forgetting something, the way I could sleep for 12 hours and wake up exhausted. Most of all, I didn’t want to claim a label that would mark me, not in a society that views disability as a personal moral failing, a fate worse than death.

But here’s the thing about illness. It doesn’t much care whether you want it or not. Unlike that OkCupid date, fibromyalgia wasn’t going to stop my hands from throbbing if I ignored it. This was a job for modern medicine, and for that, I had to claim it. More than that though, I had to claim it to accept all of the unique challenges and opportunities that come with it.

By accepting my role as a reluctant disability rights advocate, I’ve met some amazing people doing great work for equality every day. I’ve gained entry into a club that’s as exclusive as it is welcoming, and its members are always there to bear each other up when the days are too long, too dark, too hard to travel alone. It wasn’t until I claimed fibro publicly that I allowed myself to accept that community. Without it, I’d still be angry at my body for “betraying” me and in feeding that anger, I’d have wasted time wallowing in self-indulgent resentment, time that’s better spent advocating for the rights of everyone who deserves equal access, equal rights, and equal health coverage under the law. I wouldn’t be available to help those who are also struggling, to do my little part to show others that no one walks alone.

The suicide rate among those living with chronic pain (about 100 million Americans, according to a Princeton study published in Psychology Today) is twice that of the general population. That has to do with the physical and mental toll pain takes on a person, yes. But it also has to do with isolation. Depression and anxiety are co-morbid with chronic pain more often than not, and those disorders thrive on silence. I’m not willing to be complicit with that. Not anymore.

So, during Fibromyalgia Awareness Month, I’m claiming it. I’m incredibly fortunate to have reliable, relatively inexpensive healthcare that allows me to keep it under control, but that doesn’t give me a pass. Because until healthcare is a right, until disability isn’t seen as a failure, and until we can all sit at the same table with the same level of respect and support, the conversation isn’t over. Until I’m sure no one needs to hear that they’re not alone, I’ll be sharing my story and helping to amplify others’. And I hope you, whatever your personal corner of the world looks like, will too.

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